LONG COVID & ASSOCIATED CONDITIONS (12/22-ongoing) by kc

krcoombs — 2022-12-14 15:49:07 UTC

https://docs.google.com/document/d/1XbGCZ5NtwvNb0Z2fFzQYnKT96Ij79cNw1GA47rhShMo/edit?usp=drivesdk

krcoombs — 2022-12-14 17:06:34 UTC

Resources for Journalists Covering Long COVID, Disability, and Complex Chronic Illnesses – The Network for Long COVID Justice

"The NIH is committed to finding answers. Our researchers are working to learn more about the long-term effects of COVID so we can help prevent and treat them".

krcoombs — 2022-12-14 17:07:54 UTC

What is Long COVID | RECOVER COVID Initiative

Long COVID and Myalgic Encephalomyelitis "When the SARS-CoV-2 pandemic began, disability advocates sounded the alarm."

krcoombs — 2022-12-14 17:08:53 UTC

Long COVID & ME: Understanding the Connection - #MEAction Network

"The ME/CFS community is here for you as a resource ready to share its experience."

krcoombs — 2022-12-14 17:09:43 UTC

What is Long Covid? - Solve ME/CFS Initiative (solvecfs.org)

Ensuring equitable access to the health and safety of America's workers and providing resources to respond to and recover from the Coronavirus pandemic.

krcoombs — 2022-12-14 17:18:38 UTC

https://www.dol.gov/agencies/odep/topics/coronavirus-covid-19-long-covid

krcoombs — 2022-12-14 17:19:39 UTC

Publication Archive - PolyBio Research Foundation

krcoombs — 2022-12-14 17:21:25 UTC

The Yale LISTEN Study < Yale LISTEN Study

krcoombs — 2022-12-14 17:22:34 UTC

COVID-RUO Profiling - Serimmune

krcoombs — 2022-12-14 17:29:42 UTC

Research - Long Covid Families

"Symptoms of Long COVID may be the same or different than symptoms of COVID-19."

krcoombs — 2022-12-14 17:31:34 UTC

Long COVID | NIH COVID-19 Research

"Health Rising began focusing on long COVID in the first quarter of 2020."

krcoombs — 2022-12-14 17:32:55 UTC

Long COVID Resource Center - Health Rising

The work includes patient archetypes, journey maps, and opportunity areas for action.

krcoombs — 2022-12-14 17:34:04 UTC

Health+ Long COVID | HHS.gov

krcoombs — 2022-12-14 17:34:42 UTC

Billionaire-Backed Group Steps Up Hunt For Long Covid Treatment (forbes.com)

krcoombs — 2022-12-14 17:35:26 UTC

Long Covid – Long Covid Research Initiative (lc19.org)

krcoombs — 2022-12-14 17:36:40 UTC

Resources for People with Long COVID | ACL Administration for Community Living

https://www2.ed.gov/about/offices/list/ocr/docs/ocr-factsheet-504-20210726.pdf?utm_content=&utm_medium=email&utm_name=&utm_source=govdelivery&utm_term=

krcoombs — 2022-12-14 17:37:26 UTC

Long COVID or Post-COVID Conditions | CDC

Updated C-19 Resources: February 27, 2023

krcoombs — 2022-12-14 17:41:05 UTC

https://www.aarp.org/health/conditions-treatments/info-2020/coronavirus-facts.html?CMP=KNC-DSO-COR-COVID-21433-GOOG-HEALTH-COVID-ConditionsTreatments-COVID-General-Phrase-NonBrand&gclid=Cj0KCQiA0oagBhDHARIsAI-BbgcOlwIRA7fQyxhWB-R91OK-JfCV9lp_MavftSWRRCnlHpimxrfMSzcaAj6pEALw_wcB&gclsrc=aw.ds

krcoombs — 2022-12-14 18:05:01 UTC

Research Aid Networks Long Covid Library | Zotero

UK:

krcoombs — 2022-12-14 18:07:04 UTC

Resources — Long COVID Physio

"Why do doctors convey, either explicitly or implicitly, a belief that a patient’s psychological condition is solely responsible for their physical symptoms?"

krcoombs — 2022-12-16 16:29:13 UTC

"The researchers found that repeat SARS-CoV-2 infections contribute significant additional risk of adverse health conditions in multiple organ systems."

krcoombs — 2022-12-16 16:30:33 UTC

https://medicine.wustl.edu/news/repeat-covid-19-infections-increase-risk-of-organ-failure-death/#:~:text=The%20researchers%20found%20that%20repeat,gastrointestinal%20systems%3B%20and%20even%20death.

"Over 200 different symptoms have been reported that can have an impact on everyday functioning."

krcoombs — 2022-12-18 13:58:56 UTC

WHO (World Health Organization): https://www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition

"COVID-19 can affect the function of multiple organs in the body, including the lungs, heart, brain, kidneys, and liver. "

krcoombs — 2022-12-18 13:59:45 UTC

https://www.yalemedicine.org/conditions/long-covid-post-acute-sequelae-of-sars-cov-2-infection-pasc

" we describe the cognitive, social and affective factors that lead people to form or endorse misinformed views, and the psychological barriers to knowledge revision."

krcoombs — 2022-12-18 14:17:05 UTC

https://www.nature.com/articles/s44159-021-00006-y#Sec8

"Misinformation is a broader classification of false or inaccurate claims shared largely unwittingly and without the intention to deceive. Disinformation is a specific subset of misinformation created with deliberate intentions to deceive."

krcoombs — 2022-12-18 14:20:07 UTC

https://publichealth.jhu.edu/meeting-covid-19-misinformation-and-disinformation-head-on

"The pandemic has raised issues of racial and geographic discrimination, health equity, and the balance between public health imperatives and individual rights."

krcoombs — 2022-12-18 14:22:36 UTC

https://en.wikipedia.org/wiki/COVID-19_pandemic

"SARS-CoV-2 spreads faster and farther than the 2003 SARS-CoV-1 virus. This is likely because of how easily it is transmitted person to person, even from asymptomatic carriers of the virus."

krcoombs — 2022-12-18 14:23:26 UTC

https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus

"An epidemic is when an infectious disease spreads quickly to more people than experts would expect. It usually affects a larger area than an outbreak. A pandemic is a disease outbreak that spreads across countries or continents. It affects more people and takes more lives than an epidemic. "

krcoombs — 2022-12-18 14:24:56 UTC

https://www.webmd.com/cold-and-flu/what-are-epidemics-pandemics-outbreaks

"Congresswoman Ayanna Pressley (MA-07) discussed the crisis of Long COVID as a disability justice issue and outlined how the status quo has relegated disabled Americans—including those with Long COVID—to a second-class standard of living."

krcoombs — 2022-12-18 14:26:48 UTC

https://pressley.house.gov/2022/05/24/hearing-pressley-highlights-long-covid-crisis-disability-justice-issue/

"A number of post-COVID conditions have been identified in kids."

krcoombs — 2022-12-18 14:29:05 UTC

https://www.healthychildren.org/English/health-issues/conditions/COVID-19/Pages/Long-Haul-COVID-19-in-Children-and-Teens.aspx

"Your healthcare provider considers a diagnosis of post-COVID conditions based on your health history as well as doing a health examination."

krcoombs — 2022-12-18 14:30:50 UTC

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

krcoombs — 2022-12-19 21:25:21 UTC

https://longcovid.physio/long-covid-video-series

krcoombs — 2022-12-20 19:06:31 UTC

https://pandemicpatients.org/2022/11/10/pandemic-patients-launches-the-long-covid-disability-justice-2022-campaign/

krcoombs — 2022-12-20 19:10:05 UTC

"The more voices contributing to the RECOVER Initiative, the more meaningful and inclusive."

krcoombs — 2022-12-20 19:11:55 UTC

https://recovercovid.org/news-events

Self-care interactive flow chart

krcoombs — 2022-12-23 02:35:32 UTC

https://philome.la/jace_harr/you-feel-like-🤬-an-interactive-self-care-guide/play/index.html

"We know it can be intimidating and difficult to navigate finding support."

krcoombs — 2022-12-26 16:52:14 UTC

https://www.wearebodypolitic.com/resources-for-providers

"Patient led, Care Centered, Historically Informed Resources"

krcoombs — 2022-12-26 16:52:46 UTC

https://www.wearebodypolitic.com/resources

“A hallmark symptom of ME/CFS and now long COVID is post exertional malaise (PEM)."

krcoombs — 2022-12-27 14:12:40 UTC

https://www.virology.ws/2022/11/11/trial-by-error-recent-news-articles-highlight-post-exertional-malaise/
David Tuller

"chronic viral infections may influence the likelihood of someone developing Long COVID."

krcoombs — 2022-12-27 14:19:27 UTC

https://covid19.nih.gov/news-and-stories/relationship-between-chronic-viral-infection-and-long-covid#:~:text=The%20Relationship%20Between%20Chronic%20Viral%20Infection%20and%20Long%20COVID,-Home&text=Researchers%20have%20found%20that%20having,what%20symptoms%20they%20might%20have.

https://www.healthrising.org/long-covid-resource-center/

krcoombs — 2022-12-31 22:45:58 UTC

https://www.healthrising.org/long-covid-resource-center/

"With an estimated four million Americans out of work due to long COVID, staffing issues are not going to get any better in 2023."

krcoombs — 2023-01-01 22:01:47 UTC

https://theamericangenius.com/tech-news/long-covid-job-market-2023/

krcoombs — 2023-01-02 18:06:35 UTC

https://open.substack.com/pub/longcovidweekly?utm_source=share&utm_medium=android

"A way to memorialize them, to keep them from being merely statistics."

krcoombs — 2023-01-02 19:17:54 UTC

https://covid19wallofmemories.org/about-us/

"Our mission is to spread our message of hope and compassion by remembering those lost to COVID-19 during the pandemic."

krcoombs — 2023-01-02 19:18:34 UTC

http://www.ramisheartcovidmemorial.org/

"Writing about who you’ve lost can be therapeutic and life-affirming."

krcoombs — 2023-01-02 19:23:16 UTC

https://whowelost.org/

“Life expectancy for Native people in the U.S. has decreased by nearly 6.5 years since the COVID pandemic began.”

krcoombs — 2023-01-02 19:31:45 UTC

https://www.lcsun-news.com/story/news/local/new-mexico/2022/12/27/new-mexico-survivors-organize-toward-the-first-statewide-memorial-for-covid-in-the-u-s/69754152007/

This “Master Document” was created as a guide to help Longhaulers and their physicians work as a team." (C-19LAP)

krcoombs — 2023-01-02 19:36:25 UTC

https://docs.google.com/document/d/1VfENjAiOBKryT-dIOFyU8CyEAAKVR5xk9WyvlZF-u4M/edit?fbclid=IwAR2liAVnC38fE4H4L8s_Ez1svtts5l8odpz7sJeLF60wCQbkRuWAyrTNLa8

"It's unclear if long COVID is the same in children and adults, in terms of pathophysiology."

krcoombs — 2023-01-02 19:37:33 UTC

https://www.cidrap.umn.edu/covid-19/kids-similar-risk-long-covid-adults-study-suggests

UK: "The most common symptoms of long COVID in children are fatigue and headaches."

krcoombs — 2023-01-07 13:11:25 UTC

https://theconversation.com/supporting-a-child-with-long-covid-tips-from-parents-of-children-living-with-the-condition-195153

krcoombs — 2023-01-07 21:52:27 UTC

https://youtu.be/UY2vwDbLlno

krcoombs — 2023-01-07 23:05:22 UTC

https://www.accessliving.org/newsroom/blog/independent-living-history/

krcoombs — 2023-01-07 23:13:15 UTC

https://www.nilp.org/history-of-independent-living-movement/

krcoombs — 2023-01-07 23:23:42 UTC

https://www.healthrising.org/blog/2023/01/07/kynurenine-chronic-fatigue-fibromyalgia-long-covid/

"Important that those close to you really understand what chronic illness really entails. Because it seems, it is difficult for some people to 'get'."

krcoombs — 2023-01-08 20:35:49 UTC

https://www.throughthefibrofog.com/advocate-yourself-chronic-illness/

"the best solution is to create more awareness of the reality of living with a chronic condition". Canada

krcoombs — 2023-01-08 21:36:24 UTC

https://theeyeopener.com/2021/10/have-a-little-empathy-students-with-chronic-disease-feel-ignored-and-misunderstood/

Online support groups

krcoombs — 2023-01-12 19:36:46 UTC

https://longcovidalliance.org/support-groups-and-mental-health-resources/

krcoombs — 2023-01-14 01:17:19 UTC

https://www.covidcaregroup.org/research

Pediatric Infectious Diseases articles published in 2022

krcoombs — 2023-01-18 12:31:00 UTC

https://danilobuonsenso.substack.com/p/pediatric-infectious-diseases-articles?utm_medium=ios

krcoombs — 2023-01-18 16:42:33 UTC

https://www.healthdata.org/research-analysis/library?field_topics_tid=All&field_document_type_tid=All&field_publication_date_value%5Bvalue%5D%5Byear%5D=&field_people_target_id=All&field_health_conditions_tid=17054&field_risk_factors_tid=All&field_geography_global_tid=All&field_project_list_tid=All

krcoombs — 2023-01-18 16:47:58 UTC

https://www.webmd.com/covid/news/20230113/stigma-comes-with-long-covid-diagnosis

Must Read

krcoombs — 2023-01-18 16:50:27 UTC

https://www.nature.com/articles/s41579-022-00846-2

krcoombs — 2023-01-18 22:21:50 UTC

https://www.healio.com/news/neurology/20230105/neurological-effects-of-long-covid-it-is-not-only-a-respiratory-disease

krcoombs — 2023-01-19 16:09:36 UTC

https://publicgoodnews.com/2023/01/19/long-covid-latest-research-causes-how-it-develops/

Open Medicine

krcoombs — 2023-01-19 20:17:37 UTC

https://www.omf.ngo/long-covid-to-me-cfs-study/

krcoombs — 2023-01-20 02:33:41 UTC

American Academy of Physical Medicine and Rehab

krcoombs — 2023-01-20 02:37:40 UTC

https://pascdashboard.aapmr.org/

UK: There is increasing understanding of the impact of Post COVID Conditions in children.

krcoombs — 2023-01-22 01:48:46 UTC

https://journals.lww.com/co-pediatrics/fulltext/9900/diagnosis_and_management_of_post_covid__long.63.aspx

(9/22) "This year we surpassed one million deaths, and hundreds of loved ones are still dying every day. Yet we are expected to move on quickly without taking the time to grieve or come together. "

krcoombs — 2023-01-25 12:27:20 UTC

https://www.metrowestdailynews.com/story/opinion/2022/09/18/jennifer-ritz-sullivan-pushes-national-covid-19-memorial-day/10392045002/ 2022 Jennifer Ritz Sullivan

Pandemic Patients develops and publishes educational resources about COVID-19, long COVID, and Post-COVID Conditions.

krcoombs — 2023-01-27 02:08:47 UTC

https://pandemicpatients.org/home/covid-19-resources/
Christopher Floyd Andrew Wylam

krcoombs — 2023-01-27 22:42:22 UTC

https://lc19.org/

"Medicine has a long and sorry history of bias and discrimination on the basis of sex."

krcoombs — 2023-01-28 02:37:23 UTC

https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/

"As we continue to see how the pandemic as a mass disabling event impacts our populations in these large ways, we're gonna see more and more people who are experiencing disability and needing to adapt their lives to a different way of being. We can be prepared for that and create more access to create more flexibility."

krcoombs — 2023-01-28 13:15:44 UTC

https://www.dailykos.com/stories/2023/1/2/2142743/-dr-sami-schalk-on-what-we-all-need-to-know-about-disability-race-and-privilege-during-covid-19

Links to information about some of the most commonly asked questions about living with Long Covid and associated conditions.

krcoombs — 2023-01-28 18:25:29 UTC

https://solvecfs.org/solve-long-covid/long-covid-resources/

"We utilize a chronological approach to explore different ways people with disabilities have encountered ableism and its effects throughout different eras of the pandemic, with a focus on the United States. "

krcoombs — 2023-01-30 17:47:05 UTC

https://www.sciencedirect.com/science/article/pii/S1936657422001248

"The Journey to Understanding Long COVID"

krcoombs — 2023-01-31 15:10:41 UTC

https://covid19community.nih.gov/sites/default/files/CEAL-LongCovidandResearchFactSheet_1.pdf

"Nobody has fewer tools to protect themselves than immunocompromised people."

krcoombs — 2023-02-01 21:32:21 UTC

https://time.com/6251474/immunocompromised-covid-19-evusheld-fda/

"The White House is tearing away vital pandemic protections for millions of vulnerable Americans—and pretending that everything’s going to be just fine."

krcoombs — 2023-02-03 16:54:49 UTC

https://www.thenation.com/?post_type=article&p=435877

"No sector of US health care is immune from the immoderate pursuit of profit, neither drug companies, nor insurers, nor hospitals, nor investors, nor physician practices."

krcoombs — 2023-02-03 21:15:58 UTC

https://jamanetwork.com/journals/jama/fullarticle/2801097

John Hopkins to cease live COVID-19 Data Reporting on March

krcoombs — 2023-02-04 03:03:22 UTC

https://coronavirus.jhu.edu/

White Tail Deer: These findings highlight the need to establish surveillance programs that will allow continuous monitoring of the circulation, distribution, and evolution of SARS-CoV-2

krcoombs — 2023-02-04 12:37:56 UTC

https://www.pnas.org/doi/10.1073/pnas.2215067120

"But it's premature to say that Covid is no longer an economic issue."

krcoombs — 2023-02-05 01:09:53 UTC

Is the Fed ignoring long Covid in its inflation fight? https://www.cnn.com/2023/02/03/investing/premarket-stocks-trading/index.html

Household Pulse Survey to produce data on the social and economic impacts of COVID-19 on American households.

krcoombs — 2023-02-05 01:37:52 UTC

https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm Center for Disease Control (CDC)

krcoombs — 2023-02-05 16:59:26 UTC

https://www.webmd.com/covid/news/20230201/inflammation-and-immunity-top-long-covid-suspects

"Evidence exists that isolated small fiber sensory neuropathy (diagnosed by skin biopsy, not detectable with EMG testing) can result from SARS-CoV-2 infection."

krcoombs — 2023-02-05 18:30:18 UTC

https://nn.neurology.org/content/9/3/e1146#:~:text=Discussion%20Among%20evaluated%20patients%20with,dysregulation%20as%20a%20common%20mechanism.

"Millions of older adults could be suffering from debilitating symptoms of long COVID."

krcoombs — 2023-02-05 21:14:10 UTC

Long COVID in Older Adults: An Elusive Geriatric Syndrome | MedPage Today

"Medical discrimination and a lack of data make it difficult for people of color to get help for post-COVID problems"

krcoombs — 2023-02-05 21:15:10 UTC

People of Color with Long COVID Face Uphill Battle to Be Heard - Scientific American

"79% report having limitations to their day-to-day activities and 27% characterize the limitations as significant."

krcoombs — 2023-02-05 21:17:14 UTC

Long COVID: What Do the Latest Data Show? | KFF Kaiser Family Foundation

"COVID infection increases your risk of heart attack, stroke, cardiac arrest, and more."

krcoombs — 2023-02-06 01:52:00 UTC

https://thegauntlet.substack.com/p/covid-can-damage-your-heart-not-talking

"(CDC) estimating that nearly one in five people develops long-term symptoms after a Covid infection, it is time to rise up and stop the gaslighting—the rejection of the latest research and the experience of patients.

krcoombs — 2023-02-06 12:31:13 UTC

https://www.openmindmag.org/articles/gaslighting-long-haulers

A collection of articles and other resources on the Coronavirus (Covid-19) outbreak

krcoombs — 2023-02-06 13:10:34 UTC

https://www.nejm.org/coronavirus

“We so devalue disability that we don’t ever want to associate ourselves with it.”

krcoombs — 2023-02-06 14:18:37 UTC

https://www.statnews.com/2023/02/06/caregiver-crisis-laura-mauldin/

"The real harm in eugenicist and supremacist ideologies is the decision-making to exclude or annihilate groups of humans from equal and equitable access to the planet’s resources, intended to be shared by all living beings. "

krcoombs — 2023-02-06 16:54:01 UTC

https://www.psychologytoday.com/us/blog/the-mental-health-revolution/202301/understanding-the-origins-of-hurtful-comments

"Early and accurate diagnosis and treatment of Long COVID, clinically known as post-acute sequelae of COVID-19 (PASC), may mitigate progression to chronic diseases"

krcoombs — 2023-02-06 16:56:35 UTC

https://www.frontiersin.org/articles/10.3389/fmed.2022.1065620/full

"After years of working on HIV-related stigma, I was shocked to see how many people were turning a blind eye to and dismissing the difficulties experienced by people with long COVID."

krcoombs — 2023-02-06 16:57:05 UTC

https://www.medscape.com/viewarticle/986969?reg=1&icd=login_success_email_match_norm

"Several studies show that long-term symptoms can occur in children and adolescents. "

krcoombs — 2023-02-07 00:46:13 UTC

https://longcovidfamilies.org/learn-about-long-covid/kids/

https://longcovidfamilies.org/daily-living/managing-symptoms/

"Most frequent prolonged symptoms are persistent fatigue, brain fog, and depleted energy after even a minimal effort."

krcoombs — 2023-02-07 00:47:05 UTC

https://solvecfs.org/me-cfs-long-covid/resources-for-healthcare-providers/

Resources for Patients,Caregivers, & Advocates

krcoombs — 2023-02-07 00:49:33 UTC

https://longcovidalliance.org/resources/patients/

"Our joint initiative is to work with community-based organizations across the nation to deliver education, information and resources to help fight the pandemic."

krcoombs — 2023-02-07 00:55:47 UTC

https://ncrn.msm.edu/s/news Morehouse School of Medicine (MSM)

"More than 200,000 U.S. children have now lost a primary or secondary caregiver due to the pandemic, and research shows 65 percent of children were of racial and ethnic minorities."

krcoombs — 2023-02-07 01:36:04 UTC

https://www.childrensdefense.org/child-watch-columns/health/2022/communities-still-suffering-from-covid-19/

"COVID-19’s long-term inflammatory and immunosuppressive qualities are allowing these reactivations to turn into chronic infections, only adding to the host of symptoms long-haulers are forced to endure."

krcoombs — 2023-02-07 14:15:07 UTC

https://www.verywellhealth.com/long-covid-latent-viral-reactivations-5205269
Asmae Fahey

Mike Dougherty article and "deeper dig" audio extended interview

krcoombs — 2023-02-07 14:16:20 UTC

https://vtdigger.org/2022/02/22/vermonters-with-long-covid-still-face-barriers-to-care/

"A new concern is emerging: a mismatch between the burden of long COVID in rural communities and the resources available to address this complex public health challenge."

krcoombs — 2023-02-07 14:17:20 UTC

https://www.medpagetoday.com/opinion/second-.opinions/101808 11/22 Anne Sosin,MPH/Krista Coombs
Special thanks to Dr. Martha Lincoln

"The Writers Guild Initiative’s Programs are dedicated to bringing professional film and television writers together with vulnerable communities who would benefit from self-expression through writing."

krcoombs — 2023-02-07 14:17:59 UTC

https://writersguildinitiative.org/interview-with-wgi-writer-krista-coombs/ 12/22 Writer's Guild NY

"With more than one million people dead from Covid-19 in the US alone, we are experiencing a pandemic of grief that can only be lessened by recognizing our losses."

krcoombs — 2023-02-07 21:17:46 UTC

https://actionnetwork.org/letters/to-heal-we-must-remember?source=twitter&

Nearly 30 percent of those with Postural Tachycardia Syndrome (POTS) also have migraine.

krcoombs — 2023-02-08 00:08:21 UTC

https://www.psychologytoday.com/gb/blog/so-much-more-than-a-headache/202301/living-with-migraine-and-postural-tachycardia-syndrome

"Many COVID symptoms can impact a person’s physical, mental, or emotional capacity to work. "

krcoombs — 2023-02-08 21:59:31 UTC

https://www.self.com/story/long-covid-work-effects

Financial self interest in US health care

krcoombs — 2023-02-10 12:59:28 UTC

https://jamanetwork.com/journals/jama/fullarticle/2801097

Loneliness: "I also want to speak directly to those that we, the collective, have been doing a poor job considering and protecting."

krcoombs — 2023-02-10 13:05:12 UTC

https://www.latimes.com/california/newsletter/2023-02-07/the-loneliness-of-being-immunocompromised-in-the-age-of-covid-19-group-therapy

krcoombs — 2023-02-11 21:43:58 UTC

"Data captured by a long-term government survey strongly suggests that there’s been a significant increase in the kind of disability that would be consistent with long Covid."

krcoombs — 2023-02-12 03:31:05 UTC

https://www.barrons.com/articles/disability-data-long-covid-labor-market-federal-reserve-jobs-e9659f6e

krcoombs — 2023-02-12 12:37:23 UTC

https://journals.lww.com/ijmr/fulltext/2022/09000/pattern_of_liver_function_test_variations_in.16.aspx

"Building the power of people with Long COVID and associated conditions."

krcoombs — 2023-02-13 12:32:27 UTC

https://longcovidjustice.org/long-covid-justice/learn-about-long-covid/
JD Davids, Gabriel San Emeterio, Emi Kane

"Our mission is to raise awareness through teamwork."

krcoombs — 2023-02-13 12:33:17 UTC

http://masktogetheramerica.org/

Fact Sheets: National Institutes of Health (NIH)

krcoombs — 2023-02-14 11:51:39 UTC

https://covid19community.nih.gov/long-COVID

krcoombs — 2023-02-14 12:11:13 UTC

https://archive.ph/2023.02.13-163215/https://www.theatlantic.com/health/archive/2023/02/long-covid-cases-treatment-chronic-illness-emergency/673032/

Diabetes

krcoombs — 2023-02-14 23:16:57 UTC

https://www.thelancet.com/journals/landia/article/PIIS2213-8587(22)00044-4/fulltext

"Mandating a return to the office, without mandating protection on public transport or in workplaces, means we get to play Russian roulette with the virus, for ourselves, our families at home, and our communities."

krcoombs — 2023-02-15 03:12:47 UTC

https://www.baltimoresun.com/opinion/op-ed/bs-ed-op-0215-covid-work-return-20230214-nbskbi5jingkfospmqnx32tco4-story.html

Resources for leaders who want to inform their communities about long COVID

krcoombs — 2023-02-15 17:09:41 UTC

https://wecandothis.hhs.gov/resource/resources-about-long-covid Health and Human Services (HHS)

access to the written transcript: Endothelial/Vascular

krcoombs — 2023-02-15 17:35:40 UTC

https://drtalks.com/videos/the-virus-as-an-endothelial-and-vascular-disease/

"More than half of cancer patients diagnosed with COVID-19 report long COVID that may persist beyond six months"

krcoombs — 2023-02-15 21:47:40 UTC

https://consumer.healthday.com/long-covid-seen-in-most-cancer-patients-after-infection-2659391708.html

"For the health and healing of our state’s loss, a dedicated, permanent, physical memorial will honor those who died and comfort those left behind."

krcoombs — 2023-02-16 22:02:28 UTC

https://www.abqjournal.com/2572371/memorial-would-let-survivors-upload-photos-and-microobituaries-of.html?fbclid=IwAR3NSyP-MVsDLvSo7cW_F-oy_31uHt0D5IVFMLvKvo6ipSC9jpXJTKzyT08&mibextid=Zxz2cZ Eleanor Bravo Janeth Nunez Del Prado

"Millions of people left the labor force in the early days of the pandemic, due to factors like illness, caregiving and fear of infection. But workers haven’t returned as quickly as imagined, particularly those outside their prime working years."

krcoombs — 2023-02-17 00:36:46 UTC

https://www.cnbc.com/2023/01/30/long-covid-has-underappreciated-role-in-labor-gap-study.html

"Black and Hispanic Americans appear to experience more symptoms and health problems related to long COVID than white people, but are not as likely to be diagnosed with the condition."

krcoombs — 2023-02-17 12:33:51 UTC

https://www.nih.gov/news-events/news-releases/nih-recover-research-identifies-potential-long-covid-disparities

"This essay describes the cost of casting aside what is best for the public’s health in favor of individual choice, especially to those who are high-risk for serious illness or death from COVID-19. It explores how they must negotiate public health measures on their own."

krcoombs — 2023-02-17 14:47:38 UTC

https://blog.petrieflom.law.harvard.edu/2023/02/14/personal-crusades-for-public-health/

"By focusing solely on the number of people who had health plans as a measure of success, the White House is participating in a great coverup of the ongoing American healthcare tragedy."

krcoombs — 2023-02-17 14:52:16 UTC

https://inthesetimes.com/article/medicare-for-all-healthcare-biden-democrats-aca

“I now think of COVID as a neurological disease as much as I think of it as a pulmonary disease."

krcoombs — 2023-02-17 17:43:18 UTC

https://meassociation.org.uk/2023/02/scientific-american-long-covid-now-looks-like-a-neurological-disease/

"All infections can cause serious problems. Everyone is vulnerable. We can reduce our risk."

krcoombs — 2023-02-17 20:45:34 UTC

https://johnsnowproject.org/

“It can be problematic if you are reinfected."

krcoombs — 2023-02-17 20:53:10 UTC

https://www.ama-assn.org/delivering-care/public-health/what-doctors-wish-patients-knew-about-covid-19-reinfection American Medical Association

"Finding a primary care doctor who knows enough about the disease to even minimally guide you along is really difficult."

krcoombs — 2023-02-18 03:12:09 UTC

https://encephalogirl.substack.com/p/is-there-a-doctor-in-the-house

"This document offers advice and guidance for people with Long Covid who are having difficulties communicating with others as a result of their symptoms"

krcoombs — 2023-02-18 13:00:37 UTC

https://www.pslhub.org/learn/coronavirus-covid19/patient-recovery/managing-communication-difficulties-in-long-covid-1-march-2023-r8811/

Taking Care of Your Voice

krcoombs — 2023-02-18 13:01:51 UTC

https://www.nidcd.nih.gov/health/taking-care-your-voice

"Those who have been infected with the virus are at increased risk of developing a range of neurological conditions in the first year after the infection."

krcoombs — 2023-02-19 02:57:26 UTC

https://medicine.wustl.edu/news/covid-19-infections-increase-risk-of-long-term-brain-problems/

EDS (Ehlers-Danlos) and HSD (Hypermobility spectrum disorder) and C-19

krcoombs — 2023-02-20 17:13:23 UTC

https://www.ehlers-danlos.com/eds-hsd-and-covid-19/

krcoombs — 2023-02-20 19:53:46 UTC

https://www.washingtonpost.com/outlook/2022/07/29/how-decades-greed-bad-choices-left-us-vulnerable-pandemic/

krcoombs — 2023-02-21 02:45:18 UTC

https://www.migrainedisorders.org/the-connection-between-migraine-and-covid-19-long-covid/

"Most workplace accommodations for chronically ill people involve a policy change, such as such as allowing for rest breaks or remote work, or developing a plan of action for when symptoms suddenly flare."

krcoombs — 2023-02-21 12:38:29 UTC

https://www.wsj.com/articles/long-covid-is-a-disability-heres-how-to-ask-for-workplace-accommodations-9b63fd90

March 11 2023: COVID Remembrance Day Interfaith Gathering, is being held on March 11 at BOMBYX (Florence, MA)

krcoombs — 2023-02-21 14:47:59 UTC

https://www.masslive.com/coronavirus/2023/02/covid-remembrance-day-event-to-allow-space-for-grieving-catastrophic-losses.html

"...those of us who aren’t going along with the so-called “back to normal.” I want a name for this painful situation. Lacking a better one, I’ve started calling it broken sociality".

krcoombs — 2023-02-21 18:47:44 UTC

https://www.pestemag.com/lost-to-follow-up/broken-sociality

"It’s likely that more than 100 million people have acquired long COVID."

krcoombs — 2023-02-21 18:54:18 UTC

https://www.midnightsunmag.ca/why-has-the-left-deprioritized-covid/

"Researchers and providers have noted that many of the symptoms of long COVID can be similar to two other conditions — fibromyalgia, and chronic fatigue syndrome."

krcoombs — 2023-02-21 21:14:17 UTC

https://www.apta.org/article/2023/01/27/long-covid-cfs-fms-comparison#:~:text=Researchers%20and%20providers%20have%20noted,chronic%20fatigue%20syndrome%2C%20or%20CFS.

Accommodations for individuals with vision impairment. (videos)

krcoombs — 2023-02-21 21:28:06 UTC

https://www.energy.gov/cio/accommodations-vision-disabilities

There's no limit to the number of users you can share a padlet with regardless of the plan you are on. They can even post at the same time! Try the Grid or Wall format if you have multiple people working in a padlet at the same time.

krcoombs — 2023-02-21 21:29:14 UTC

"Around 1 million U.S.-based workers cannot resume being a part of the workforce, thanks to long Covid."

krcoombs — 2023-02-21 21:41:32 UTC

https://www.forbes.com/sites/anuradhavaranasi/2023/02/21/people-with-long-covid-are-more-likely-to-be-unemployed/

CDC: Who needs extra protections

krcoombs — 2023-02-21 21:48:11 UTC

https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html

CDC: "Health equity is the state in which everyone has a fair and just opportunity to attain their highest level of health."

krcoombs — 2023-02-21 21:48:46 UTC

https://www.cdc.gov/chronicdisease/healthequity/index.htm

1918 Post flu pandemic

krcoombs — 2023-02-21 22:07:53 UTC

https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30189-7/fulltext#:~:text=In%201918%2C%20influenza%20caused%20one,more%20than%20one%20million%20individuals.

Ways to use padlet layouts

krcoombs — 2023-02-21 22:31:09 UTC

https://lms.unimelb.edu.au/staff/guides/padlet/padlet-layout-options

The World Health Organization living guideline for the clinical management of COVID-19, section 24, focuses on Long COVID rehabilitation and provides explicit guidance on when exercise is not safe of effective.

krcoombs — 2023-02-21 23:14:34 UTC

https://longcovid.physio/exercise

"In reality, 8.6 million adult workers are disabled—that’s 6 percent of the adult employed workforce or about 1 in 16 workers."

krcoombs — 2023-02-23 12:38:27 UTC

https://tcf.org/content/commentary/the-labor-movement-is-incomplete-without-disability-justice/
The Century Foundation

"Practicing inclusion during COVID-19 means acknowledging the health and safety needs of all people."

krcoombs — 2023-02-23 12:52:40 UTC

https://www.strategiesforhighimpact.org/covid-inclusion

"It appears that Black communities are bearing the brunt of long-haul COVID."

krcoombs — 2023-02-23 14:10:57 UTC

https://tminstituteldf.org/how-race-shapes-covid19/

"I want to invite anyone who didn’t know any of the above to join the movement to save lives, stop the spread, clean the air, and treat Long COVID. "

krcoombs — 2023-02-23 14:55:56 UTC

https://thegauntlet.substack.com/p/the-revolution-will-not-be-ableist?utm_medium=email

"POTS (postural orthostatic tachycardia syndrome) patients may also have stomach aches, headaches, and brain fog."

krcoombs — 2023-02-23 17:20:20 UTC

https://www.wfyi.org/news/articles/long-covid-patients-join-a-chronic-illness-community-seeking-answers

"How can people not see that this is a national tragedy?"

krcoombs — 2023-02-23 18:41:51 UTC

https://www.latimes.com/opinion/story/2022-06-10/covid-memorial-day-pandemic-survivors 2022

"Just who were those 15,000 lives lost to the coronavirus? We don’t really know that much about them." Colorado

krcoombs — 2023-02-23 18:52:07 UTC

https://www.cpr.org/2023/01/31/colorado-covid-deaths-memorial/

"I know that a key to healing from trauma is to hold space, to feel what you need to feel, and to do this in community."

krcoombs — 2023-02-23 18:54:36 UTC

https://www.npr.org/2022/03/09/1085243575/marked-by-covid-memorial-day-march 2022

"Patients with the coronavirus who need communication tools and supports."

krcoombs — 2023-02-23 19:34:41 UTC

https://communicationfirst.org/covid-19/

SARS:2002/3 MERS:2012

krcoombs — 2023-02-23 20:03:07 UTC

https://www.mayoclinic.org/coronavirus-covid-19/history-disease-outbreaks-vaccine-timeline/sars-mers#:~:text=2002%2D2003-,Severe%20acute%20respiratory%20syndrome%20coronavirus%20(SARS%2DCoV)%2C%20which,develop%20vaccines%20for%20SARS%2DCoV.latest developments, research trials, resources, and information about the coronavirus, long-term effects, and recovery

Similarities between yesterday’s polio epidemics and today’s coronavirus pandemic can be observed in the lived experiences of survivors.

krcoombs — 2023-02-23 20:16:17 UTC

https://www.immunizepa.org/polio-and-covid-19-then-and-now-from-three-polio-survivors/

"COVID-19 and Post-COVID Considerations in Children and Teens" Scroll to section.

krcoombs — 2023-02-24 22:28:06 UTC

https://batemanhornecenter.org/education/long-covid/

"Catching COVID-19 may raise the risk of developing autoimmune disease by 43% in the months following the infection, according to the largest study of its kind."

krcoombs — 2023-02-25 12:43:28 UTC

https://www.livescience.com/covid-19-linked-to-40-increase-in-autoimmune-disease-risk-in-huge-study

"The country needs public health systems led by collectives with training across the range of social and biological sciences."

krcoombs — 2023-02-25 13:28:12 UTC

https://www.statnews.com/2023/02/24/fixing-public-health-systems-revolution-physicians-take-backseat/

"Post-COVID conditions may not affect everyone the same way. "

krcoombs — 2023-02-25 15:18:34 UTC

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html?fbclid=IwAR1zh81gmdavExVUKZuOIdWy_pq21GRz2G6QE7EGEq7btmW_m4sIht9WEO0 (Centers for Disease Control and Prevention)

"With a condition like Long Covid, though, experts say the timeframe may need to be significantly longer as well as non-linear"

krcoombs — 2023-02-25 21:37:10 UTC

https://www.ft.com/content/fb77b3ef-0ad6-4bc6-a44b-fd6e0bdfe846

"coronaviruses frequently recombine during viral genome replication, causing the production of new genetic variants that may influence the future evolutionary paths of SARS-CoV-2."

krcoombs — 2023-02-26 17:05:59 UTC

https://en.wikipedia.org/wiki/Endemic_COVID-19

Patient Advocacy Tips

krcoombs — 2023-02-26 21:25:38 UTC

http://www.dysautonomiainternational.org/page.php?ID=108

krcoombs — 2023-02-26 21:30:56 UTC

https://www.science.org/doi/10.1126/science.abd9149

"A place to share remembrances of loved ones lost to the coronavirus pandemic, and to encourage public health measures that can prevent more deaths in the future. "

krcoombs — 2023-02-27 01:29:39 UTC

https://covidmemorial.online/

“The pandemic has created a need to “democratize grief” and acknowledge what the country has been through."

krcoombs — 2023-02-27 01:35:48 UTC

https://www.forbes.com/sites/carlieporterfield/2022/03/18/inside-the-movement-to-build-a-national-covid-memorial/?sh=280015437830

"This checklist is designed to help patients and caregivers get the most out of appointments with healthcare providers."

krcoombs — 2023-02-27 14:56:10 UTC

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/post-covid-appointment/appointment-checklist.pdf

krcoombs — 2023-02-27 20:03:11 UTC

What I’ve learned being reliant on a caregiver https://www.cnn.com/2023/02/22/opinions/caregiver-advocacy-legislation-wong-ctrp/index.html

"Long COVID was strongly correlated with low levels of the hormone cortisol, and patients also have more active antibodies against the Epstein-Barr virus."

krcoombs — 2023-02-27 22:02:39 UTC

https://yalealumnimagazine.org/articles/5623

"Patients made visible the persistence and heterogeneity of COVID-19 symptoms. Patients experiencing long-term symptoms (‘long-haulers’)made Long Covid. Long Covid challenges early clinical and governmental assumptions about Covid. Knowledge travelled from patients through media to formal health and policy channels. Patient expertise and knowledge should be incorporated in the pandemic evidence base."

krcoombs — 2023-02-27 22:07:52 UTC

https://www.sciencedirect.com/science/article/pii/S0277953620306456 Felicity Callard Elisa Perego

"Self-advocacy guide to Social Security Disability. This guide is designed for anyone who is homebound and for people with invisible illnesses."

krcoombs — 2023-02-27 22:08:44 UTC

https://howtogeton.wordpress.com/social-security-disability/

"This vulnerable population needs support to manage life with ME / CFS and their parents’ need tools to help them."

krcoombs — 2023-02-28 01:12:56 UTC

https://www.omf.ngo/mecfs-and-pediatrics/

"More than two years after the lockdown, the disease continues to exert a brake on the US economy through productive workdays lost to worker illness, caregivers’ responsibilities for children and seniors, and compliance with isolation guidelines."

krcoombs — 2023-02-28 12:09:32 UTC

https://www.mckinsey.com/industries/healthcare/our-insights/one-billion-days-lost-how-covid-19-is-hurting-the-us-workforce

Hypotheses: Viral persistence (infx virus, viral RNA, viral proteins), Autoimmunity, Reactivation of latent viruses, and Inflammation leading to tissue dysfunction and damage."

krcoombs — 2023-02-28 12:38:54 UTC

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00053-1/fulltext

"Unlike workers whose jobs offer benefits packages, some freelancers like Steinberg say they find themselves locked out of benefits like health, dental, life, and short- and long-term disability insurance. "

krcoombs — 2023-02-28 13:48:04 UTC

Long Covid disabled them. Then they met a ‘broken’ Social Security disability process https://www.cnn.com/2023/02/25/business/long-covid-workforce-issues-disability-claims/index.html

WHO 2016 Guide: "Bioethics puts people at the heart of theproblem, emphasizes the principles thatshould guide health systems, and providesthe moral rationale for making choices,particularly in a crisis."

krcoombs — 2023-02-28 13:56:06 UTC

https://apps.who.int/iris/bitstream/handle/10665/250580/9789241549837-eng.pdf;jsessionid=C9EAFE9875CC54ADF9FBA13170A4FBEC?sequence=1

MIS-C is a rare condition that usually occurs two to six weeks after a child is infected with COVID-19.

krcoombs — 2023-02-28 18:10:40 UTC

https://cardiovascularbusiness.com/topics/clinical/COVID-19/video-cardiologists-share-latest-details-covid-related-mis-c

"Long COVID appears to be a multisystem disease"

krcoombs — 2023-02-28 20:44:02 UTC

https://me-pedia.org/wiki/Long_COVID

"We must act now to form and implement a national crisis management plan"

krcoombs — 2023-02-28 21:30:45 UTC

https://www.aapmr.org/members-publications/covid-19/pasc-guidance
American Academy of Physical Medicine and Rehabilitation

"Peluso explained that long COVID is not just one syndrome."

krcoombs — 2023-03-01 13:47:46 UTC

https://www.poz.com/article/much-remains-learned-long-covid

"Medical providers should carefully monitor symptoms among COVID-19 patients with IDD diagnosed with hypothyroidism and/or seizures.”

krcoombs — 2023-03-01 14:08:13 UTC

https://www.disabilityscoop.com/2022/09/26/covid-19-was-leading-killer-of-people-with-developmental-disabilities/30052/

krcoombs — 2023-03-02 21:02:50 UTC

https://www.bbc.co.uk/programmes/m001jkqn

"CDC estimates 1 in 13 adults in the U.S. is suffering from the illness."

krcoombs — 2023-03-02 21:12:09 UTC

https://www.newswise.com/coronavirus/researcher-leonard-a-jason-pushes-discovery-on-long-covid-mecfs

"Thousands of research participants are now providing health information and undergoing in-depth medical evaluations and tests."

krcoombs — 2023-03-02 23:36:19 UTC

https://directorsblog.nih.gov/2023/03/02/recover-what-clinical-research-comes-next-for-helping-people-with-long-covid/

March 6, 2023: 5PT/8ET Register here

krcoombs — 2023-03-02 23:38:12 UTC

https://markedbycovid.zoom.us/meeting/register/tZYsce2orTovH9MB49MO61fMuM3HBADeJyaS?fbclid=IwAR3IK8EsH-KwP22AojwyoTIPoq75p9I6t34kKhhBF7kq2T2FBCeJXBW1pmA&link_id=3&can_id=8303520a2495336536164f3233d1325c&source=email-urgent-were-about-to-lose-critical-housing-food-public-safety-medical-services-2&email_referrer=email_1834192&email_subject=join-liz-warren-greg-stanton-kristin-urquiza-more-for-covid-memorial-day

"Building the power of chronically-ill & disabled, our groups and our networks."

krcoombs — 2023-03-03 01:18:05 UTC

https://www.strategiesforhighimpact.org/publications

"You'll find links to resources on symptoms and how you can protect yourself and your family."

krcoombs — 2023-03-03 01:33:59 UTC

https://medlineplus.gov/covid19coronavirusdisease2019.html
National Library of Science (NLS)

"And in a perfect world, we would have targeted therapies—an antiviral for COVID, and an antibiotic for Lyme— able to eradicate both of these pathogens."

krcoombs — 2023-03-03 02:20:03 UTC

https://www.lymedisease.org/lyme-covid-mast-cell-activation/

"Our findings suggest that some long-COVID patients had damage to their peripheral nerve fibers."

krcoombs — 2023-03-03 12:51:09 UTC

https://www.medpagetoday.com/neurology/generalneurology/97470

"Not only were older adults hardest hit, more than half of Americans age 50 and older who were infected had some long COVID symptoms."

krcoombs — 2023-03-03 17:10:03 UTC

https://www.aarp.org/health/conditions-treatments/info-2023/older-americans-hit-hard-by-coronavirus-long-covid.html

Native Americans and Alaska Natives were the most disproportionately affected by Covid, 50 percent higher than among white Americans.

krcoombs — 2023-03-03 17:14:43 UTC

https://www.nytimes.com/2022/08/31/health/life-expectancy-covid-native-americans-alaskans.html

"BHC’s years of clincial care and research experience can help inform patients and healthcare professionals."

krcoombs — 2023-03-03 18:15:26 UTC

https://batemanhornecenter.org/education/long-covid/

https://batemanhornecenter.org/category/long-covid/

"If you are experiencing lingering symptoms after a COVID-19 infection, one of the most important things to do is recognize that it may be Long COVID."

krcoombs — 2023-03-03 18:32:10 UTC

https://www.longhauler-advocacy.org/long-covid-dashboard

High-quality research grants seeking to identify the biological causes of Long COVID, and to identify effective treatments for Long COVID.

krcoombs — 2023-03-03 18:46:18 UTC

"We share our stories, support each other, and advocate for a stronger pandemic response to save the lives of others."

krcoombs — 2023-03-03 19:15:54 UTC

https://covidsurvivorsforchange.org/

Rapidly improve our understanding of SARS-CoV-2 and develop therapeutics against SARS-CoV-2.

krcoombs — 2023-03-03 19:27:12 UTC

https://www.cov-irt.org/useful-links-of-covid-19-resources/

"We all have a responsibility and an opportunity to improve the health and learning outcomes of children with Long Covid"

krcoombs — 2023-03-03 19:31:55 UTC

https://www.longcovidkids.org/

"studying cryptic lineages has challenged his thinking about the coronavirus’ ability to hang on in human tissues"

krcoombs — 2023-03-03 22:10:06 UTC

https://www.bloomberg.com/news/features/2023-03-01/hidden-viruses-in-your-body-could-answer-why-long-covid-lingers

Children and adolescents showing signs of post-COVID conditions.

krcoombs — 2023-03-03 22:11:51 UTC

https://www.medpagetoday.com/infectiousdisease/longcovid/103300

"Estimates that the number of people with POTS has at least doubled since the start of the pandemic."

krcoombs — 2023-03-03 22:12:06 UTC

https://www.washingtonpost.com/wellness/2023/02/27/pots-heart-fainting-long-covid/

krcoombs — 2023-03-03 22:27:21 UTC

https://en.wikipedia.org/wiki/West_Nile_virus_in_the_United_States

"Multiracial, Hispanic and Latino, and Black Americans experienced the highest rates of long COVID. Asian Americans had the highest rate of severe long COVID."

krcoombs — 2023-03-03 22:33:25 UTC

https://usafacts.org/articles/these-races-are-the-most-likely-to-develop-long-covid/

"Between 22% and 36% of people infected with SARS-CoV-2 do not seroconvert, and many others lose their antibodies over the first few

krcoombs — 2023-03-04 01:32:50 UTC

https://www.cidrap.umn.edu/covid-19/more-65-million-people-around-world-may-have-long-covid Center for Infectious Disease Research and Policy

"The daily difficulties of living with long COVID and the steps schools can take to protect their students from its symptoms." UK

krcoombs — 2023-03-04 01:33:31 UTC

https://www.who.int/europe/news/item/30-08-2022-life-as-a-young-person-with-long-covid---you-go-through-so-many-phases-of-up-and-down--it-s-like-being-on-a-rollercoaster-forever Kitty McFarland

"The mechanisms underlying immunocompromised people’s increased susceptibility to COVID-19 are complex."

krcoombs — 2023-03-04 01:35:18 UTC

https://www.idsociety.org/covid-19-real-time-learning-network/special-populations/immunocompromised-populations/

"One of the biggest challenges is figuring out how to get healthy enough to return to work."

krcoombs — 2023-03-04 01:37:41 UTC

https://news.northeastern.edu/2023/02/22/long-covid-study-employment/

"The five most prevalent were mood symptoms, fatigue, sleep disorders, headache and respiratory symptoms."

krcoombs — 2023-03-04 10:28:04 UTC

https://www.euronews.com/next/2022/03/15/long-covid-has-been-found-in-1-in-4-symptomatic-children-a-new-study-finds-what-are-the-sy
*data pooled from 21 studies previously carried out in Europe, Asia, Australia and South America

Response, Recovery, Restitution, Resiliency, Recognition

krcoombs — 2023-03-04 15:43:25 UTC

https://www.markedbycovid.com/?link_id=11&can_id=8303520a2495336536164f3233d1325c&email_referrer=email_1835754___subject_2341956&email_subject=youre-invited-community-reflection-and-remembrance

Vermont State Lead: Covid 19 Longhaulers Advocacy Project (C-19LAP)

krcoombs — 2023-03-04 16:13:08 UTC

https://www.longhauler-advocacy.org/support-us
Started in June 2020 by Karyn Bishof

Employment as "Long COVID Advocate" with Vermont Center of Independent Living (VCIL).

krcoombs — 2023-03-04 16:16:14 UTC

https://vcil.org/about/
VCIL is a nonprofit directed and staffed by people with disabilities started in 1979.
https://vcil.org/about/history/

"Created by & for those most harmed, our policies ensure pandemic justice & remembrance"

krcoombs — 2023-03-04 16:21:48 UTC

https://www.markedbycovid.com/policy
Founded by Kristin Urquiza, MPA & Christine Keeves, MPH

"We want to include patients, caregivers, and community Representatives to help make plans for and provide suggestions on the research being done."

krcoombs — 2023-03-04 16:27:16 UTC

https://recovercovid.org/faqs#engagement

"Our group consists of people from all over the world who have tested positive, are experiencing symptoms, or are recovering from COVID-19."

krcoombs — 2023-03-04 16:40:30 UTC

https://www.wearebodypolitic.com/covid-19
Body Politic started the COVID-19 Support Group after Founder and President Fiona Lowenstein, and Board Member Sabrina Bleich became sick with coronavirus.

krcoombs — 2023-03-04 16:52:46 UTC

https://longcovidfamilies.org/

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System.

krcoombs — 2023-03-04 17:02:13 UTC

https://www.dysautonomiainternational.org/page.php?ID=22

"They hope to provide answers to not only COVID “long haulers,” but also patients suffering from other poorly understood chronic conditions."

krcoombs — 2023-03-04 17:06:56 UTC

https://medicine.yale.edu/news-article/will-long-covid-research-provide-answers-for-poorly-understood-ailments-like-chronic-fatigue/

"The most prevalent Long Covid symptoms — crippling fatigue, post-exertional malaise and cognitive dysfunction — mirror those of ME/CFS."

krcoombs — 2023-03-04 17:16:03 UTC

https://solvecfs.org/me-cfs-long-covid/

"This information can be useful for scientists to keep up to date with which species have been infected with SARS-CoV-2 and watch for potential spillovers of the virus back into humans."

krcoombs — 2023-03-04 19:43:52 UTC

https://wildlife.org/new-database-tracks-coronavirus-in-wildlife/

"Current knowledge indicates that wildlife does not play a significant role in the spread of SARS-CoV-2 in humans, but spread in animal populations can affect the health of these populations and may facilitate the emergence of new virus variants."

krcoombs — 2023-03-04 19:45:05 UTC

https://www.who.int/news/item/07-03-2022-joint-statement-on-the-prioritization-of-monitoring-sars-cov-2-infection-in-wildlife-and-preventing-the-formation-of-animal-reservoirs

"Cats and dogs are not easily infected under natural conditions, and there is limited evidence that infected cats or dogs spread the virus to other animals."

krcoombs — 2023-03-04 19:47:25 UTC

https://www.avma.org/resources-tools/one-health/covid-19/sars-cov-2-animals-including-pets

"A number of animals worldwide have been infected with the virus that causes COVID-19, including pets like cats and dogs, farmed mink, and large cats, gorillas, and otters in zoos, sanctuaries, and aquariums."

krcoombs — 2023-03-04 19:48:41 UTC

https://www.cdc.gov/healthypets/covid-19/index.html

"Since January 2020 we have been compiling on this webpage popular media OpEds, Commentaries, Podcasts and other media (including some scientific articles) about the coronavirus pandemic that mention and/or call for One Health by name"

krcoombs — 2023-03-04 19:52:42 UTC

https://www.onehealthcommission.org/en/news/covid19_and_one_health/ One Health is an integrated, unifying approach that aims to sustainably balance and optimize the health of people, animals and ecosystems.

"EcoHealth Alliance is working to discover emerging diseases using a first-of-its kind predictive map of disease hotspots."

krcoombs — 2023-03-04 19:57:21 UTC

https://www.ecohealthalliance.org/program/emerging-disease-hotspots

" A grassroots solution-based movement to mobilize the sharply increasing number of people affected by COVID-19."

krcoombs — 2023-03-04 20:12:37 UTC

https://www.survivorcorps.com/
Diana Berrent Guthe

"Determined to play a part in improving health and learning outcomes for her daughter, children and young people."

krcoombs — 2023-03-04 20:16:29 UTC

https://www.longcovidkids.org/
Sammie McFarland (UK)

"Help the Long Covid community discover practical ways to enjoy life while impacted by chronic illness."

krcoombs — 2023-03-04 20:19:29 UTC

https://longcovidfamilies.org/
Megan Carmilani

"A group of Long Covid patients who are also researchers."

krcoombs — 2023-03-04 20:24:03 UTC

https://patientresearchcovid19.com/ Hannah Davis, Hannah Wei, Gina Assaf, Dr. Athena Akrami, Lisa McCorkell

"This page is specifically intended for medical providers."

krcoombs — 2023-03-04 20:26:08 UTC

https://longcovidfamilies.org/healthcare/for-doctors/"

"The You + ME Registry + Biobank is a collection of patient-reported data + biological samples (e.g. blood)."

krcoombs — 2023-03-04 20:28:21 UTC

https://youandmeregistry.com/

"The Global Pandemic Coalition works with leaders, Governments, think tanks and policy advisers."

krcoombs — 2023-03-04 20:32:19 UTC

http://www.globalpandemiccoalition.org/policy/ Coalition includes Healthcare Systems, Hospitals, Labs, Clinics, Telemedicine, AI, HealthTech and many other types other healthcare providers, services and companies from 6 continents helping the fight against COVID-19 and infectious disease.

"LongCovid and ME/CFS are not mysterious or hopeless. The opposite is true."

krcoombs — 2023-03-04 20:39:39 UTC

https://polybio.org/#section-about
Dr. Michael Vanelzakker Dr Amy Proal

"those that became pandemics, like COVID-19—are those that have best exploited humans' global networks and behaviors in a given age."

krcoombs — 2023-03-04 21:08:57 UTC

https://onlinelibrary.wiley.com/doi/10.1111/1600-0498.12306
Dr. Monica Green: "Emerging diseases, re-emerging histories"

American Academy of Pediatrics

krcoombs — 2023-03-04 21:32:17 UTC

https://www.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/clinical-guidance/post-covid-19-conditions-in-children-and-adolescents/

Section 4: "What to do if a Child or Student is experiencing long COVID"

krcoombs — 2023-03-04 21:34:56 UTC

https://www2.ed.gov/about/offices/list/ocr/docs/ocr-factsheet-504-20210726.pdf

“You’re almost twice as likely to get long COVID just being a woman, controlling for everything else.”

krcoombs — 2023-03-05 01:15:06 UTC

https://news.northeastern.edu/2022/11/08/women-long-covid-risk/#:~:text=%E2%80%9CWhat%20was%20interesting%20was%20we,%2C%20controlling%20for%20everything%20else.%E2%80%9D

"Current diagnostic and treatment options are insufficient, and clinical trials must be prioritized that address leading hypotheses."

krcoombs — 2023-03-05 01:39:12 UTC

https://www.nature.com/articles/s41579-022-00846-2
Hannah Davis, Lisa McCorkell, Julia Vogel, Eric Topol

"Somewhere between 22% and 32% of people who recover from COVID-19 get “brain fog,”

krcoombs — 2023-03-05 12:57:37 UTC

https://www.webmd.com/covid/news/20221128/is-it-long-covid-or-dementia-or-both

"A persistent headache that develops after having COVID-19. Symptoms can last for weeks or even months."

krcoombs — 2023-03-05 14:47:55 UTC

https://americanmigrainefoundation.org/resource-library/migraine-post-covid-headache/

Increasing recognition and care for people with long COVID

krcoombs — 2023-03-05 14:59:15 UTC

https://www.who.int/europe/news-room/feature-stories/item/coping-with-the-unknown---a-family-s-story-of-living-with-long-covid
Claire Hastie (UK)

"We want to make sure children and families have the information they need."

krcoombs — 2023-03-05 15:06:21 UTC

https://www.childrensdefense.org/useful-resource-covid-19/

Long COVID Awareness Day: March 15 Ribbon disease colors: teal and grey

krcoombs — 2023-03-05 15:14:03 UTC

https://docs.google.com/document/d/1_KyVllwn2Ysoah9GUXZ662QmCaoNhB-rGU2iUueaHBM/edit

"It’s important to know how diabetes can impact COVID and long COVID -- and vice versa."

krcoombs — 2023-03-05 15:55:21 UTC

https://www.webmd.com/covid/long-covid-diabetes

"Recovery time from exertion is prolonged, lasting days or sometimes weeks to months."

krcoombs — 2023-03-05 16:01:45 UTC

https://me-pedia.org/wiki/Post-exertional_malaise#Characteristics

Advocacy Days in May: trainings and support with telling your story to state US Congressional leadership (ie. Sen Bernie Sanders for me)

krcoombs — 2023-03-05 19:41:13 UTC

https://solvecfs.org/advocacy/

"Singing together has brought joy and friendship as we navigate the life-changing experience of Long Covid."

krcoombs — 2023-03-05 19:45:43 UTC

https://www.longcovidchoir.org/videos
Claire Hastie, Catherine Chin, Merel van der Knoop, Zoe Challenor

The findings “highlight long Covid as an underappreciated yet important reason for the many unfilled jobs and declining labor participation rate in the economy."

krcoombs — 2023-03-05 20:12:44 UTC

https://www.nytimes.com/2023/01/24/health/long-covid-work.html

Resources for Job Accommodations, Returning to Work after Illness, Employee Rights and Benefits

krcoombs — 2023-03-05 20:16:22 UTC

https://www.dol.gov/agencies/odep/topics/coronavirus-covid-19-long-covid/workers

"Immersive art installation and AR experience that includes thousands of small, paper suitcases, representing the total number of COVID-19 related deaths in Arizona."

krcoombs — 2023-03-06 00:49:51 UTC

https://www.remarkablepresence.com/about/

A community driven memorial to honor those that have died from COVID-19. The project consists of large 50 x 72 inch panels on which golden circles drawn – one circle for each person.

krcoombs — 2023-03-06 00:56:08 UTC

https://tinarath.com/requiem/

"Black women have been overrepresented in the industries that experienced the largest pandemic-related job losses, such as hospitality, education, and health services."

krcoombs — 2023-03-06 01:39:52 UTC

https://www.technologyreview.com/2022/09/20/1059679/racial-disparities-of-long-covid/

A guide navigating follow-up care, Emergency care, specialist visits, and even in-patient hospital stays.

krcoombs — 2023-03-06 02:11:15 UTC

https://www.cynthiaadinig.com/guide

"The risk of animals spreading COVID-19 to people is low. Pets can get serious illness from infection with the virus that causes COVID-19, but this is extremely rare."

krcoombs — 2023-03-06 13:26:19 UTC

https://www.cdc.gov/healthypets/covid-19/pets.html

"Join in the Serimmune COVID-19 Study to help scientists understand the immune response to the virus."

krcoombs — 2023-03-06 13:57:37 UTC

https://serimmune.com/covid-19-study/"

https://serimmune.com/covid-19-study/data/

"Kindred is a growing health network for anyone affected by COVID. Collaborate on COVID research with leading scientists." (App based)

krcoombs — 2023-03-06 14:00:27 UTC

https://www.kindred.hugo.health/
https://www.kindred.hugo.health/research/listen-study
https://medicine.yale.edu/ycci/listen-study/

“We need many more therapeutic targets and many more treatment options.”

krcoombs — 2023-03-07 23:37:22 UTC

https://www.healthrising.org/blog/2023/03/07/treatments-long-covid-solve-me-bio/

Paxlovid: “It's really our first efficacious oral antiviral pill for this virus. It shows clear benefit, and it really can prevent hospitalization and death in people who are at high risk.”

krcoombs — 2023-03-08 17:57:19 UTC

https://www.yalemedicine.org/news/13-things-to-know-paxlovid-covid-19#:~:text=The%20FDA%20authorized%20Paxlovid%20for,for%20developing%20severe%20COVID%2D19.

"Works to promote health and reduce health inequities for people with disabilities of all ages, so they can participate fully in all aspects of their communities."

krcoombs — 2023-03-08 18:00:34 UTC

https://www.cdc.gov/ncbddd/humandevelopment/health-equity.html
The Division of Human Development and Disability (DHDD)

Underlying Medical Conditions Associated with Higher Risk for Severe COVID-19: Information for Healthcare Professionals (CDC)

krcoombs — 2023-03-08 19:03:39 UTC

https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/underlyingconditions.html

Consider therapies, such as antivirals, when treating patients with mild to moderate illness and risk factors for severe illness. These therapeutics have been shown to significantly decrease the risk of hospitalization and death.

krcoombs — 2023-03-08 19:05:45 UTC

https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/clinical-considerations-course.html

This padlet is available to use and to share freely. Link and QR attached here

krcoombs — 2023-03-09 21:03:57 UTC

https://padlet.com/krcoombs/long-covid-associated-conditions-2eb2h1agyvdeyffh
Can also use arrow on right (PC) or down below (phone)

"“We have great tools in our toolbox for acute COVID,” Geng said. “We have no tools for long COVID.”

krcoombs — 2023-03-10 02:46:01 UTC

https://med.stanford.edu/news/all-news/2023/03/long-covid-pandemic-anniversary.html

"Given what we now know about the effects of long COVID and its biological basis, it must be taken seriously."

krcoombs — 2023-03-11 02:55:54 UTC

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)00493-2/fulltext?utm_campaign=eds23&utm_content=241077924&utm_medium=social&utm_source=twitter&hss_channel=tw-27013292

Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) "Most commonly affecting children, this condition causes a wide range of physical and mental health symptoms."

krcoombs — 2023-03-12 21:01:11 UTC

https://www.longcovidkids.org/post/what-is-paediatric-acute-onset-neuropsychiatric-syndrome-pans-and-how-is-it-treated

March 15, 2023: International Long COVID Day

krcoombs — 2023-03-12 21:05:27 UTC

https://www.longcovidawareness.life/
https://www.longcovidsos.org/awareness

"Not only did the pandemic create high rates of infection, hospitalization, and death among Latinos, it also worsened historical health inequities."

krcoombs — 2023-03-15 23:06:55 UTC

https://salud-america.org/long-covid-what-is-known-how-is-it-impacting-latinos/

"Recognize that long COVID could affect your students."

krcoombs — 2023-03-16 15:40:19 UTC

https://www.edweek.org/leadership/thousands-of-students-will-face-long-covid-schools-need-to-plan-now/2022/06

"For Long Covid Awareness Day I was treated to a festival of retweets from real patients who fit that same profile of such a stark before and after."

krcoombs — 2023-03-17 01:07:24 UTC

https://www.patheos.com/blogs/jenniferfitz/2023/03/long-covid-in-athletes/
Multiple links to twitter posts

"COVID-19 testing is going to move further in two separate directions: rapid, at-home tests at the individual level, and wastewater testing at the community level."

krcoombs — 2023-03-19 19:21:09 UTC

https://coviddatadispatch.com/2023/03/19/at-home-tests-wastewater-covid-19-testing-after-the-public-health-emergency-ends/

"Could gut troubles also fall among the constellation of chronic symptoms that people with long-haul COVID experience?"

krcoombs — 2023-03-20 16:51:37 UTC

https://www.health.harvard.edu/blog/can-long-covid-affect-the-gut-202303202903

"Like the White House’s plan to privatize COVID treatments and vaccines, Medicaid coverage is another public health emergency measure that’s been deemed no longer necessary."

krcoombs — 2023-03-22 00:54:38 UTC

https://www.teenvogue.com/story/medicaid-coverage-covid

"This data points to a relationship between trauma and COVID-19 PASC symptoms, warranting further research."

krcoombs — 2023-03-22 16:13:28 UTC

https://www.newswise.com/coronavirus/long-haul-covid-19-linked-with-ptsd-says-study/?article_id=789136
by Association of Academic Physiatrists (AAP)

"There have been new reports that firm up evidence for 4 ways to reduce the likelihood of chronic sequelae from a Covid infection (or re-infection)."

krcoombs — 2023-03-23 16:03:56 UTC

https://erictopol.substack.com/p/preventing-long-covid

“This new evidence suggests that there may be important differences in how long COVID manifests in different racial and ethnic groups,”

krcoombs — 2023-03-23 16:59:47 UTC

https://www.nih.gov/news-events/news-releases/nih-recover-research-identifies-potential-long-covid-disparities

"It was recognised early in the COVID‐19 pandemic that people with an intellectual disability may be disproportionately affected by this virus."

krcoombs — 2023-03-23 17:04:43 UTC

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9538317/

"The failure to recognise the ongoing severity of COVID-19 is creating a reality gap that is being filled by groups peddling misinformation."

krcoombs — 2023-03-24 10:35:33 UTC

https://johnsnowproject.org/insights/the-reality-gap/

"This review addresses potential mechanisms and hypotheses that connect SARS-CoV-2 infection to long-term health consequences."

krcoombs — 2023-03-24 17:10:19 UTC

https://elifesciences.org/articles/86002
Zaki Sherif et al. NIH Mechanistic Pathways Task Force

"Unfortunate reality in the Long COVID media landscape that a lot of journalists and commentators write about this condition without really doing their research."

krcoombs — 2023-03-26 17:07:27 UTC

https://coviddatadispatch.com/2023/03/26/pushing-back-against-long-covid-misinformation/

"Congress can literally change the course of the NIH and a disease with a stroke of the pen. During an Advocacy Week ME/CFS and long COVID advocates paved the way for the $1.15 billion to show up."

krcoombs — 2023-03-28 20:22:15 UTC

https://www.healthrising.org/blog/2023/03/28/advocacy-week-long-covid-chronic-fatigue/

Want to share a resource? Go here.

krcoombs — 2023-03-29 00:54:00 UTC

https://padlet.com/krcoombs/long-covid-associated-conditions-tzrti22i6g3c44ta

"It is well-known, however, that its lingering effects can have a catastrophic impact on patients, crushing not only their health, but their finances"

krcoombs — 2023-03-30 00:40:45 UTC

https://www.kiplinger.com/retirement/social-security/604456/covid-long-haulers-could-find-help-from-social-security

C-19LAP: 2022 In Review, Long COVID

krcoombs — 2023-03-30 15:35:01 UTC

https://www.youtube.com/watch?v=HLQ7srsi0GE
COVID-19 Longhaulers Advocacy Project

"The July 2021 guidance recognized long covid under the Americans with Disabilities Act but didn’t extend to the Social Security Administration, which runs benefit programs."

krcoombs — 2023-03-30 17:13:47 UTC

https://khn.org/news/article/long-covid-barriers-government-disability-benefits/

"The Long COVID Resource Page, which is opening on COVID Memorial Day, represents a public action calling for compassion and comprehension about Long COVID and its associated conditions."

krcoombs — 2023-03-31 15:32:19 UTC

https://www.bennington.edu/center-advancement-of-public-action/environment-and-public-action/public-health-and-long-covid

"Worry that putting certain RECOVER participants through exercise trials could cause them harm."

krcoombs — 2023-04-01 01:22:58 UTC

https://www.nature.com/articles/d41586-023-00900-w

"Our goal is for the United States to become a place where our government champions policies and laws that protect the livelihood and future of our children."

krcoombs — 2023-04-02 17:51:13 UTC

https://littlelobbyists.org/statements-and-press-releases

"Unfortunately, as time passes, we don’t do a great job at recalling events, integrating those events into our lives, or using those experiences to make future decisions/judgments."

krcoombs — 2023-04-04 13:33:19 UTC

https://yourlocalepidemiologist.substack.com/p/why-do-we-forget-after-catastrophic?publication_id=281219&isFreemail=false

"Fifteen leaders in long COVID-19 research have banded together to lobby the government for assistance in improving the lives of patients suffering with the chronic form of the disease."

krcoombs — 2023-04-04 18:54:12 UTC

https://www.cleveland.com/news/2023/04/researchers-call-for-federal-plan-to-better-care-for-long-covid-19-patients.html "We can’t just wait for RECOVER. We feel an urgency that others are not feeling.”

Directory of Centers for Independent Living (CILs) and Associations

krcoombs — 2023-04-05 19:55:56 UTC

https://www.ilru.org/projects/cil-net/cil-center-and-association-directory

FACT SHEET: Biden-Harris Administration Makes Progress in the Whole-of-Government Response to Long COVID

krcoombs — 2023-04-06 16:59:48 UTC

https://www.hhs.gov/about/news/2023/04/05/fact-sheet-biden-harris-administration-makes-progress-whole-government-response-long-covid.html?utm_campaign=dc_diagnosis&utm_medium=email&_hsmi=253258200&_hsenc=p2ANqtz-8hxfjvt94wCQ_P_ya-mqgk010X_3yG27Oi320L-Ua0qL_Rf-50wCC-ZfB5r0mYFEqTeGpmNaKYnh-IvXmirWpD0qRtLQ&utm_content=253258200&utm_source=hs_email

"While countries all over the world saw life expectancy rebound during the second year of the pandemic after the arrival of vaccines, the U.S. did not."

krcoombs — 2023-04-06 17:01:39 UTC

https://www.npr.org/sections/health-shots/2023/03/25/1164819944/live-free-and-die-the-sad-state-of-u-s-life-expectancy

"Did you get postural orthostatic tachycardia syndrome (POTS) after COVID-19? You may be eligible to take part in medical research."

krcoombs — 2023-04-07 15:10:49 UTC

https://www.alphastudyforpots.com/#!/

"While there are many things we do not yet know about Long COVID, BHC’s years of clinical care and research experience can help inform healthcare professionals."

krcoombs — 2023-04-08 20:25:35 UTC

https://batemanhornecenter.org/providers/long-covid/

"Given these numbers and the continued high transmission rate, the pool of long-COVID sufferers is more likely growing, not shrinking."

krcoombs — 2023-04-11 00:30:17 UTC

https://capitalandmain.com/working-sick-americans-with-long-covid-struggle-to-make-a-living

"In our current moment, the Covid response (or lack thereof) is characterized by incoherence and abandonment as well as a marked antagonism towards those of us whose ongoing vulnerability breaks the suspension of disbelief."

krcoombs — 2023-04-11 02:08:00 UTC

https://disabilityvisibilityproject.com/2023/04/09/mask-off-at-the-door-policies-undermine-our-rights-as-disabled-people/

"Their actions build on a long history of disabled and chronically ill people mobilizing on behalf of their communities." #Millions Missing

krcoombs — 2023-04-12 11:00:53 UTC

https://www.thenation.com/article/society/long-covid-disability-policy/

"Some people find others’ suffering unbearable because of their own trauma."

krcoombs — 2023-04-12 17:30:38 UTC

https://maija-haavisto.medium.com/why-healthy-people-abandon-their-chronically-ill-friends-2d7d6231949

"Employers, individuals, and businesses can accommodate and support those with Long COVID in many ways, including the following..."

krcoombs — 2023-04-12 17:38:12 UTC

https://wid.org/the-effects-of-long-covid/

"Coombs is a first-wave Longhauler and parent of children with Long COVID and post- COVID POTS, which is what brought her to advocate for Long COVID and its Associated Conditions."

krcoombs — 2023-04-12 17:47:35 UTC

https://www.longhauler-advocacy.org/so/4cOTpmoNI?languageTag=en&cid=a5c53664-b33a-4c70-b345-1d122c4dfa79

"The School-Based Active Surveillance (SBAS) project relies on school nurses to help track chronic absenteeism among students, as a way to better understand how many students may struggle with chronic illnesses."

krcoombs — 2023-04-12 20:55:11 UTC

https://www.cdc.gov/me-cfs/programs/School-Based-Active-Surveillance.html

"Chronic fatigue syndrome (ME/CFS) experts are now bringing decades of experience to bear on treating long-COVID patients. "

krcoombs — 2023-04-12 23:00:16 UTC

https://www.healthrising.org/blog/2023/04/12/chronic-fatigue-syndrome-long-covid-recovery/

"We’re beginning to realize increasingly the long-term impacts of viruses."

krcoombs — 2023-04-14 20:14:37 UTC

https://www.fredhutch.org/en/news/center-news/2023/04/viruses-linger-with-lasting-impact-hpv-hsv-hiv-long-covid.html?utm_source=substack&utm_medium=email

“The clinical burden [of long COVID] is somewhere on par with the whole of heart disease all over again, or the whole of oncology all over again."

krcoombs — 2023-04-18 12:36:20 UTC

https://www.webmd.com/covid/news/20230412/long-covid-on-par-with-heart-disease-cancer

"The study showed that sleep disturbance after COVID hospitalization was associated with dyspnea and lower lung function."

krcoombs — 2023-04-18 14:55:54 UTC

https://www.medscape.com/resource/long-covid

A network devoted to global compassion—working together to inspire collective action through science for a safer, healthier world: World Health Organization

krcoombs — 2023-04-18 15:01:03 UTC

https://www.longcovidlearning.org/the-research

"One of these recommendations, the formal designation of people with disabilities as a US health disparity population, can be enacted immediately, which would spur new federal investment in disability-based disparities research."

krcoombs — 2023-04-19 13:56:08 UTC

It's time for the NIH to formally designate people with disabilities as a US health disparity population - ScienceDirect

krcoombs — 2023-04-20 19:58:20 UTC

https://www.statnews.com/2023/04/20/long-covid-nih-billion/

"While some of the associations between viruses and long-term chronic conditions have been known for years, others, like the link between EBV and MS, are just coming to light."

krcoombs — 2023-04-21 15:50:35 UTC

https://www.fredhutch.org/en/news/center-news/2023/04/viruses-linger-with-lasting-impact-hpv-hsv-hiv-long-covid.html

"The most commonly reported fungal infections in patients with COVID-19 include aspergillosis, invasive candidiasis, and mucormycosis (black fungus)

krcoombs — 2023-04-22 18:10:02 UTC

https://www.cdc.gov/fungal/covid-fungal.html

NIH Mental Health Resources for Children and Adolescents

krcoombs — 2023-04-22 19:13:15 UTC

https://www.nimh.nih.gov/health/publications/children-and-adolescents-listing

"Many people are experiencing grief during the COVID-19 pandemic. Grief is a normal response to loss during or after a disaster or other traumatic event."

krcoombs — 2023-04-22 20:27:25 UTC

https://www.cdc.gov/mentalhealth/stress-coping/grief-loss/index.html

krcoombs — 2023-04-22 20:32:46 UTC

https://whyy.org/segments/pandemic-grief-similar-to-violent-death-grief/

"It’s been three years of loss, fear and disruption since the World Health Organization declared Covid-19 a global pandemic on March 11, 2020, and many around the world are designing spaces for communal mourning."

krcoombs — 2023-04-22 20:37:11 UTC

https://www.bloomberg.com/news/features/2023-03-10/to-create-covid-19-memorials-communities-lead-the-way

Reintroduced a resolution that would designate the first Monday of March to memorialize those lost to COVID–19. (Senators Edward J. Markey and Elizabeth Warren)

krcoombs — 2023-04-22 20:39:54 UTC

https://www.markey.senate.gov/news/press-releases/senators-markey-and-warren-reintroduce-resolution-memorializing-those-lost-to-covid19

"Some lawmakers and advocates, including people with long COVID, say not enough is being done to protect their well-being and ensure they can continue to be employed."

krcoombs — 2023-04-22 23:47:50 UTC

https://neworleanscitybusiness.com/blog/2023/04/17/long-covid-is-hurting-business/

"A panzootic — a widespread outbreak of disease among nonhuman animals — is underway."

krcoombs — 2023-04-23 15:06:02 UTC

https://www.nytimes.com/2023/04/23/opinion/bird-flu.html

"We have found that one of the most significant barriers faced by patients is medical gaslighting by the people they have turned to for help."

krcoombs — 2023-04-23 17:54:09 UTC

https://theconversation.com/people-with-long-covid-continue-to-experience-medical-gaslighting-more-than-3-years-into-the-pandemic-203744

"Two and half years later, with the RECOVER Initiative failing to provide anything even remotely significant, it’s no surprise to see investigative reporters asking – what the heck is going on?"

krcoombs — 2023-04-24 19:27:07 UTC

https://www.healthrising.org/blog/2023/04/23/stat-long-covid-recover/

NIH Community Engagement Alliance (CEAL) Fact Sheets

krcoombs — 2023-04-24 21:38:56 UTC

https://covid19community.nih.gov/long-COVID

"Historical concept that many chronic diseases are caused by focal infections."

krcoombs — 2023-04-27 00:19:40 UTC

https://www.wikiwand.com/en/Focal_infection_theory. Modern medicine has found that most chronic diseases have more complex causes than just focal infections

What We Know and Don't Know About Pediatric Long-COVID: Videos/Notes from Conference

krcoombs — 2023-04-27 02:53:30 UTC

https://twu.edu/woodcock-institute/national-covid-conference/ Videos available through July 2023

Plain language: Learn about the latest science from RECOVER in a format that is easy to understand and discover what the research means for our ability to predict, treat, and prevent the long-term effects of COVID.

krcoombs — 2023-04-28 01:21:42 UTC

https://recovercovid.org/recover-results

Long COVID Kids Support Pack Guide (144 pages)

krcoombs — 2023-04-28 02:17:35 UTC

https://www.calameo.com/brand-and-soul/books/0005611766a955a557db0

"Research has found that American households with a disabled adult need an average 28% more income "to achieve the same standard of living as a comparable household without a disabled member."

krcoombs — 2023-04-28 15:16:57 UTC

https://www.businessinsider.com/personal-finance/disabled-tax-pay-extra-necessities-2023-4

"NINDS announced the development of a Research Roadmap for ME/CFS, which will identify research priorities to move the field toward translational studies and clinical trials."

krcoombs — 2023-04-28 16:38:04 UTC

https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group

"Long COVID disproportionately affects premenopausal women, but relatively few studies have examined Long COVID's impact on female reproductive health."

krcoombs — 2023-04-29 14:40:28 UTC

https://www.frontiersin.org/articles/10.3389/fresc.2023.1122673/full

"Often in the disabled community, your access is dependent on the compassion of the gatekeepers you encounter, the lawyers they consult, or the funds and time you have to dedicate to gaining access."

krcoombs — 2023-05-01 01:40:47 UTC

https://vtdigger.org/2023/04/27/elizabeth-george-public-health-emergency-is-ending-but-not-for-our-family/

"Changes in Brain Activation Pattern During Working Memory Tasks in People With Post-COVID Condition and Persistent Neuropsychiatric Symptoms"

krcoombs — 2023-05-01 16:28:28 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-patients-show-abnormal-brain-activity-mri-while-doing-memory-tasks
https://n.neurology.org/content/early/2023/04/26/WNL.0000000000207309

The new NANDS Council Working Group will develop a research roadmap to provide scientific guidance to the NANDS Council on how best to advance research on ME/CFS.

krcoombs — 2023-05-01 19:05:08 UTC

https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group National Advisory Neurological Disorders and Stroke (NANDS)

This Month in Disability Rights - March 2023: Disability Rights Education & Defense Fund (DREDF)

krcoombs — 2023-05-01 19:14:37 UTC

https://mailchi.mp/dredf/dredf-monthly-march-2023?e=[UNIQID]

Understanding the Long-term Impact of COVID-19 in Adults (RECOVER)

krcoombs — 2023-05-01 19:38:42 UTC

https://clinicaltrials.gov/ct2/show/NCT05172024

"Engaging patients, caregivers, clinicians, insurers, and other healthcare community members is at the core of PCORI’s patient-centered approach to research funding."

krcoombs — 2023-05-01 19:43:04 UTC

https://www.pcori.org/funding-opportunities/what-who-we-fund
https://www.pcori.org/about/about-pcori/pcori-strategic-plan/pcori-strategic-plan-national-priorities-health

"Help accelerate the cure for ME/CFS, Long COVID, and related diseases through research participation."

krcoombs — 2023-05-02 16:07:30 UTC

https://studypages.com/s/the-omf-studyme-registry-207141/

"It’s far from the most celebrated date on the calendar, but Smallpox Eradication Day marks what I think is one of the most meaningful achievements in human history."

krcoombs — 2023-05-03 17:13:08 UTC

https://www.vox.com/future-perfect/2023/5/3/23709475/smallpox-world-health-organization-disease-covid-vaccination-health

"A symptom that has been reported in children with Long COVID. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM."

krcoombs — 2023-05-04 15:06:11 UTC

https://twu.edu/media/documents/woodcock-institute/PediatricGuidetoPacing2.pdf

"Spotlight issue: How Epidemics End?" Brepols online journal (multiple articles)

krcoombs — 2023-05-05 16:44:09 UTC

https://www.brepolsonline.net/toc/cnt/2022/64/1#/toc/cnt/64/1

"Key" work accomodations. Accommodation and Compliance: Long COVID

krcoombs — 2023-05-05 17:38:59 UTC

https://askjan.org/disabilities/Long-COVID.cfm

The U.S. Department of Labor announced today that a new report finds that nearly half of workplace accommodations made for people with disabilities can be implemented at no cost to employers.

krcoombs — 2023-05-05 17:44:27 UTC

https://www.dol.gov/newsroom/releases/odep/odep20230504

"Knowing how to help patients who are unemployed and struggling with long COVID symptoms is key."

krcoombs — 2023-05-05 20:58:10 UTC

https://www.ama-assn.org/delivering-care/public-health/1-8-patients-long-covid-also-deal-unemployment

"Grassroots self help & patient advocacy alliance made up of Black & African-American patients/ caregivers/surviving family members".

krcoombs — 2023-05-05 22:52:51 UTC

https://bcsalliance.org/get-help/
Mental Health Helplines

"The latest VPAT for Padlet is now available via the Padlet Accessibility page, which also highlights recent fixes."

krcoombs — 2023-05-05 23:06:17 UTC

skus.northampton.ac.uk/Learntech/faq/188648#:~:text=Does%20Padlet%20support%20screen%20readers,be%20created%20using%20a%20shortcut.

"Last week, the Centers for Disease Control and Prevention announced that covid was the fourth leading cause of death in the U.S. in 2022".

krcoombs — 2023-05-09 11:15:39 UTC

https://www.newyorker.com/magazine/2023/05/15/ending-the-covid-public-health-emergency-isnt-all-good-news

"Rehabilitation is a broad term that includes any activity or intervention that may address disability, to help people be as independent as possible in everyday activities, and enable participation in meaningful life roles, such as being a partner, employee or caregiver".

krcoombs — 2023-05-09 13:51:00 UTC

https://longcovid.physio/long-covid-video-series/safe-rehab

"It’s left millions of Americans trying their best to balance childrearing with chronic illness".

krcoombs — 2023-05-10 01:42:39 UTC

https://www.webmd.com/covid/news/20230508/for-long-covid-parents-everyday-life-is-still-a-struggle

"Deeper explorations of the mechanisms of viral persistence should aid in the design of clinical trials to match symptoms with trials of drugs that can target specific pathogenic pathways".

krcoombs — 2023-05-10 11:56:55 UTC

https://elifesciences.org/articles/86015 NIH Mechanistic Pathways Task force

"Targeting Resources for Equitable Access to Treatment for Long COVID (TREAT Long COVID) Act to increase access to medical care and treatment for communities and individuals struggling with Long COVID and its associated conditions".

krcoombs — 2023-05-11 17:54:06 UTC

https://pressley.house.gov/2023/05/11/as-covid-emergency-ends-pressley-beyer-blunt-rochester-unveil-bill-to-support-covid-long-haulers/

“We have to prioritize those who are most vulnerable when it comes to access to long COVID care". Representative Ayanna Pressley

krcoombs — 2023-05-11 18:30:27 UTC

https://www.bostonglobe.com/2023/05/11/opinion/long-covid-health-care-treat-bill/

"Long COVID may be behind the recent surge in US women with a disability, who surpassed their male counterparts in the workforce during the pandemic, reversing historic trends".

krcoombs — 2023-05-11 18:35:07 UTC

https://www.bostonglobe.com/2023/03/09/business/recent-surge-us-women-with-disability-may-be-due-long-covid/

CDC: Protect Your Child from COVID-19, the Flu, and Other Illnesses. Help Your Child Stay Healthy at School. Guidance started 4/23

krcoombs — 2023-05-11 18:48:05 UTC

https://www.cdc.gov/coronavirus/2019-ncov/communication/people-with-idd/help-child-stay-healthy-at-school.html

"Since the beginning of the COVID pandemic, disabled people have been consistently an afterthought in policy-making and in the implementation of public health measures. This moment is no different ".

krcoombs — 2023-05-12 01:41:32 UTC

"Fully understanding health inequities requires clarification of the ways in which structural ableism interacts with other structural forms of oppression."

krcoombs — 2023-05-13 15:05:32 UTC

https://www.nejm.org/doi/full/10.1056/NEJMp2302561

"We aim to determine whether contracting COVID-19 multiple times increases the chances of developing Long COVID or worsens the health and quality of life of those with the illness".

krcoombs — 2023-05-13 15:47:06 UTC

https://patientresearchcovid19.com/reinfections-study/

CDC 4/25/23: COVID-19 Resources for People with Intellectual and Developmental Disabilities and Their Care Providers

krcoombs — 2023-05-13 15:57:05 UTC

https://www.cdc.gov/coronavirus/2019-ncov/communication/people-with-idd/index.html?COVID19-E2RH-PPKCOVID19-E2RH-PPK-020

"Studies estimate Medicare for All would save $650 billion and 68,000 lives per year".

krcoombs — 2023-05-18 00:23:09 UTC

https://www.sanders.senate.gov/press-releases/news-sanders-jayapal-dingell-more-than-120-colleaguesin-house-and-senatereintroduce-medicare-for-all/

“I urge you to treat Long Covid with the same urgency as acute Covid-19. Congress entrusted NIH with significant funding to provide relief to our constituents suffering from this life-altering disease, but so far, it hasn’t delivered that relief”.

krcoombs — 2023-05-18 02:02:22 UTC

http://eshoo.house.gov/media/press-releases/rep-eshoo-urges-national-institutes-health-address-long-covid

"It's been drummed into us that death is the only serious outcome [of the virus] and we still haven't made enough space for the idea that long COVID is a very serious outcome".

krcoombs — 2023-05-19 01:12:39 UTC

https://www.medscape.com/viewarticle/992093

"The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has issued new consensus guidance on the assessment and treatment of neurologic sequelae in patients with long COVID, also known as post-acute sequelae of SARS-CoV-2 infection (PASC)".

krcoombs — 2023-05-19 12:55:24 UTC

https://www.medscape.com/viewarticle/992185

"Clinicians need to evaluate new or worsening neurologic symptoms of post-acute sequelae of SARS-CoV-2 infection (PASC) and treat or refer them to specialists when appropriate".

krcoombs — 2023-05-20 01:21:15 UTC

https://www.medpagetoday.com/special-reports/exclusives/104564

"The COVID-19 Longhauler Advocacy Project is a movement that gives a platform for long COVID sufferers to share their stories and their fight for better research and resources for their condition".

krcoombs — 2023-05-20 01:55:08 UTC

https://www.medicaldaily.com/long-covid-patients-campaign-keep-masks-healthcare-settings-469793

"While the CDC will continue to regularly update its main COVID-19 dashboard and other data sources, the agency’s failure to maintain even a fairly basic update newsletter really speaks to its deprioritization of COVID-19".

krcoombs — 2023-05-21 17:14:21 UTC

https://coviddatadispatch.com/2023/03/19/covid-source-callout-cdc-ends-its-data-newsletter/

"If we are to make good on this tragedy, we will see the totality of losses sustained by our rural neighbors and not simply those that blemished our pandemic success stories."

krcoombs — 2023-05-23 12:23:28 UTC

https://www.thenation.com/article/society/covid-vermont-rural-response/

"The first is that people with long COVID had reduced circulating levels of cortisol. The second is that we detected recent reactivation of Epstein-Barr virus in people who have long COVID compared to those who recover.Third, we found that the immune cells are differentially activated. Finally, we find that antibody levels to the SARS-CoV-2 viral antigens are elevated in people with long COVID".

krcoombs — 2023-05-25 14:35:02 UTC

https://www.ama-assn.org/delivering-care/public-health/long-covid-new-research-common-symptoms-long-term-effects-and

Schmidt Initiative LC Global Echo series

krcoombs — 2023-05-25 21:24:43 UTC

https://iecho.org/public/program/PRGM1678206703665XBA2JB5VDC

Arizona State Long COVID ECHO

krcoombs — 2023-05-25 21:25:21 UTC

https://chs.asu.edu/project-echo/join/long-covid-echo

University of Utah Long COVID ECHO

krcoombs — 2023-05-25 21:26:20 UTC

https://physicians.utah.edu/echo/long-covid

"RECOVER is a prime example of how RTI supports translational research and science that require complex research networks. Using our scientific, technical and management skills, we build a foundation that enables successful complex research across large networks".

krcoombs — 2023-05-25 21:36:14 UTC

https://www.rti.org/impact/long-term-effects-covid-research

"Many infections are associated with POTS. Different infection-associated POTS syndromes present with similar symptoms and may share common underlying mechanisms".

krcoombs — 2023-05-26 01:58:56 UTC

https://www.hopkinslyme.org/lyme-education/what-is-dysautonomia/

"Paxlovid is the fourth drug—and first oral antiviral pill—approved by the FDA to treat COVID-19 in adults".

krcoombs — 2023-05-26 12:41:30 UTC

https://www.fda.gov/news-events/press-announcements/fda-approves-first-oral-antiviral-treatment-covid-19-adults 5/25/23

"A study including all Danish adults published yesterday in JAMA Psychiatry suggests an increased risk of new-onset mental illness only in SARS-CoV-2–positive patients aged 70 and older".

krcoombs — 2023-05-27 03:24:59 UTC

https://www.cidrap.umn.edu/covid-19/risk-new-post-covid-mental-disorders-higher-only-older-patients-study-suggests

"In this review, we examine the current literature on mechanisms of immune dysregulation in severe COVID-19 and the limited emerging data on the immunopathology of PASC".

krcoombs — 2023-05-27 12:03:08 UTC

https://elifesciences.org/articles/86014

"#MillionsMissing 2023 will demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated, complex- chronic diseases"

krcoombs — 2023-05-27 12:11:20 UTC

https://www.youtube.com/live/HuyeHvM8Usc?feature=share Jaime Seltzer 17:40

"The authors concluded that children had an important role in the spread of SARS-CoV-2 and that in-person school also resulted in substantial spread".

krcoombs — 2023-06-02 20:47:12 UTC

https://www.cidrap.umn.edu/covid-19/more-70-us-household-covid-spread-started-child-study-suggests

"PEM is truly all the hazard lights blinking at once. Multiple systems have been studied and shown to be dysregulated".

krcoombs — 2023-06-03 00:11:11 UTC

https://encephalogirl.substack.com/p/post-exertional-blowback?utm_medium=email

"In other words, these unused COVID funds will be redistributed by Congress during this year's budget process to other parts of the federal budget, reducing overall government spending".

krcoombs — 2023-06-03 03:07:42 UTC

https://www.npr.org/2023/05/31/1178996725/debt-ceiling-deal-unspent-covid-relief-money-democrats-republicans

"As the diversity of rural areas continues to grow, health equity has become elevated in national discussions, particularly since the pandemic shed light on rural health disparities and the ways small towns are uniquely vulnerable to certain social determinants of health and health-related challenges. ". #FacesofRural

krcoombs — 2023-06-06 20:48:44 UTC

https://www.ruralhealth.us/blogs/ruralhealthvoices/may-2023/the-power-of-rural-health-research

"How primary care clinicians can focus the limited time they have with patients when they suspect a neurologic complaint may be the result of COVID-19".

krcoombs — 2023-06-07 16:32:54 UTC

https://www.patientcareonline.com/view/how-to-identify-neurologic-symptoms-of-long-covid-in-a-short-primary-care-visit-a-physiatry-based-guide: Awareness, Red flag symptoms, thorough eval, use resources

Long COVID, Healthcare, Daily Living, Latest Resources, Advocacy Resources

krcoombs — 2023-06-07 17:15:44 UTC

“The payers and the people denying benefits to people with long COVID always say the same thing: ‘Oh, you don’t have enough evidence. We don’t have an objective test to prove that you’re sick,’” he said. “Please let us stop asking sick people to prove to us that they’re sick”.

krcoombs — 2023-06-08 11:49:57 UTC

https://www.kqed.org/news/11951994/for-many-long-covid-patients-qualifying-for-disability-is-half-the-battle

"Pacing based on energy conservation, which is similar to the strategies used in ME/CFS, was successfully used in patients with RA and those with MS". N=86

krcoombs — 2023-06-08 20:58:58 UTC

https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-023-04229-w RA Rheumatoid Arthritis MS Multiple Sclerosis

"The study authors carefully note that “iterative refinement that further incorporates other clinical features is needed to support actionable definitions of PASC.” However, mainstream media outlets like the Washington Post have already mischaracterized this study by hailing it as a “unified framework” for long COVID, which is an extreme oversimplification of this disease".

krcoombs — 2023-06-09 02:45:21 UTC

https://pandemicpatients.org/2023/06/07/recover-study-promotes-damaging-framework-for-long-covid/

Bateman Horne Center Long COVID Support Group Series beginning June 13th. Mon @3 EST

krcoombs — 2023-06-09 16:33:13 UTC

https://batemanhornecenter.org/outreach/support-connect/

Join Dysautonomia International for the world's largest conference on autonomic nervous system disorders.

krcoombs — 2023-06-09 18:57:55 UTC

https://www.dysautonomiainternational.org/pdf/2023ConferenceFlyer.pdf Online options for viewing speakers

The Alpha Study is evaluating how safe an investigational medication is and whether it is effective in treating adults who have symptoms of post–COVID-19 POTS. N=42

krcoombs — 2023-06-09 23:21:14 UTC

https://www.alphastudyforpots.com/#!/

"This study considered 37 symptoms, and identified 12 that were most distinguishable when comparing COVID-infected and COVID-uninfected groups. Again, this study’s consideration of certain symptoms does not make other symptoms less real, debilitating, common, important, or worthy of scientific research and medical attention".

krcoombs — 2023-06-10 20:08:11 UTC

https://recovercovid.org/updates/recover-research-qa

Investing in health systems research on how to organize and deliver patient-centered care, support to smaller communities to establish multidisciplinary clinics, and enhancing the ability of primary care practices to use emerging evidence.

krcoombs — 2023-06-10 20:34:29 UTC

https://www.ahrq.gov/coronavirus/long-covid.html AHRQ= Agency for Healthcare Research & Quality

"Start with believing what the disabled person says about the severity of their symptoms - and build up from there".

krcoombs — 2023-06-11 16:20:44 UTC

https://stickmancommunications.blogspot.com/2023/06/communicating-about-disability-when.html

IACCPAC= Infection Associated Chronic Conditions Patient Advocacy Coalition "The emergent coalition aims to improve patient outcomes, inform clinical education and research, and increase public engagement."

krcoombs — 2023-06-15 00:57:18 UTC

https://www.longhauler-advocacy.org/so/73OYy2Ho-?languageTag=en&cid=14ee03bd-3a33-499b-bac6-503c4ec7af97

"Long-term Care Facilities (LTCFs) COVID-19 Module, which enables an assessment of the impact of COVID-19 through facility reported information".

krcoombs — 2023-06-16 13:33:16 UTC

https://www.cdc.gov/nhsn/covid19/ltc-report-overview.html

"Effective therapies that target the condition’s root causes could be a few years away".

krcoombs — 2023-06-16 18:54:14 UTC

https://magazine.ucsf.edu/whats-new-search-long-covid-cure

"COVID-19 is an occupational disease that sickened and killed countless workers in health care and long-term care, and in meat processing, agriculture, warehousing, transportation, corrections, and other “essential” industries. Nonetheless, COVID-19 has rarely been treated or tracked as an occupational disease by public health agencies, particularly in non–health care workplaces".

krcoombs — 2023-06-16 19:03:16 UTC

https://jamanetwork.com/journals/jama/fullarticle/2806496

"Clinicians play a critical role in evaluating and supporting patients in their return to work. Tailored support and workplace accommodations are an important part of caring for patients with Long COVID".

krcoombs — 2023-06-16 20:26:00 UTC

https://emergency.cdc.gov/coca/calls/2023/callinfo_061523.asp

In light of the rise of long COVID as a persistent and significant health issue, the Office for Civil Rights of the Department of Health and Human Services and the Civil Rights Division of the Department of Justice have joined together to provide this guidance.

krcoombs — 2023-06-20 20:25:42 UTC

https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html

"About 18% of those with Long COVID have not returned to work for over a year. The CDC says it's "hurting the U.S. economy".

krcoombs — 2023-06-23 20:48:20 UTC

https://tech.co/news/cdc-research-long-covid-labor-shortage

Understanding the Energy Envelope and Pacing during the Push/Crash Cycle, PEM triggers

krcoombs — 2023-06-24 18:16:43 UTC

https://batemanhornecenter.org/wp-content/uploads/2023/05/Push-Crash-Cycle-05_2023.pdf
PEM=Post Exertional Malaise

"But if “Marked by Covid Memorial Matrix” inspires actions that prevent further infection, further death and loss from Covid, and leads to policies that mitigate the spread of this disease and begin to compensate the communities hardest hit by the pandemic, such memory might then be called reparative—the ongoing mending of a world broken by Covid".

krcoombs — 2023-06-24 19:19:11 UTC

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10225787/

"A digital genre provides a vehicle for shared experiences of loss—even as the United States marks the end of the COVID health emergency".

krcoombs — 2023-06-24 19:21:58 UTC

https://www.anthropology-news.org/articles/snapshots-of-grief/

Family Health Centers of San Diego, Project ECHO, University of Washington and University of Colorado have collaborated to provide a CDC-funded monthly learning session.

krcoombs — 2023-06-24 19:39:44 UTC

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-fatiguing-illness-recovery/

"Study investigating whether abnormal pituitary hormone levels are a cause of post-COVID fatigue". Nationwide recruitment now open.

krcoombs — 2023-06-25 18:40:54 UTC

https://reports.mountsinai.org/article/endo2023-_11_covid-trial?_ga=2.14447038.825339517.1687710658-274680662.1683651368

"The nonprofit estimates that prior to Covid, some 3 million Americans were impacted by POTS. Post-pandemic research suggests that number could now be as high as 6 million, and that there may be a correlation between POTS and long Covid".

krcoombs — 2023-06-26 02:33:40 UTC

https://www.arlingtonmagazine.com/pots-postural-orthostatic-tachycardia-syndrome/

"I hope the vaccine will help,” she said. “I mean, the goal is to have an impact on reducing Lyme disease cases in humans”.

krcoombs — 2023-06-26 15:52:27 UTC

https://news.uthsc.edu/uthsc-researchers-lyme-disease-intervention-headed-to-market/

"Healthy adults and individuals with ME/CFS or Long Covid in the United States are eligible to participate. BH4 deficiency may be relevant to many different disease conditions, and we are interested in the connection between BH4 and the symptom of fatigue".

krcoombs — 2023-06-28 13:06:12 UTC

https://studypages.com/s/study-to-investigate-the-potential-role-of-tetrahydrobiopterin-bh4-deficiency-in-mecfs-and-long-covid-525299/

Long Covid Rehabilitation: A Guide for Healthcare Professionals is a comprehensive online course designed to provide rehabilitation professionals with the knowledge and skills necessary to effectively treat patients with Long COVID.

krcoombs — 2023-06-28 18:50:05 UTC

https://mshs.broadcastmed.io/

The Forgotten Plague: Documentary about Tuberculosis on the American Experience

krcoombs — 2023-06-30 17:55:04 UTC

https://www.pbs.org/wgbh/americanexperience/films/plague/#part01

“Government and medical institutions are letting people who are experiencing long Covid fall through the cracks,” says Ladau. “And that’s to the detriment of everyone. We should care about advocating for support and solutions for the sake of a safer future for all of us.”

krcoombs — 2023-06-30 18:27:18 UTC

https://getpocket.com/collections/long-covid-marginalized-groups

"The recent study found there was a 14% rise in the rate during the first year of the pandemic, compared to before Covid in the second year of Covid, the rate was up about 27% on pre-pandemic levels".

krcoombs — 2023-06-30 18:51:48 UTC

https://www.bbc.com/news/health-66054946

"Trauma-focused psychotherapy is the premier treatment for PTSD, but medication has an important role to play. Emerging and alternative treatments, as well as methods to better engage patients or enhance their treatment response, are also described".

krcoombs — 2023-06-30 19:50:26 UTC

https://www.ptsd.va.gov/professional/treat/txessentials/index.asp

"Nearly 16% of adults said they had long COVID symptoms at some point in time. The rate would mean that more than 40 million Americans have experienced long COVID".

krcoombs — 2023-06-30 23:40:35 UTC

https://www.usnews.com/news/health-news/articles/2023-06-30/federal-survey-11-of-previously-infected-u-s-adults-report-long-covid-symptoms

Written by someone with chronic migraine, this blog offers support and information to the migraine community.

krcoombs — 2023-07-02 16:27:18 UTC

https://thecounterfactualbrain.wordpress.com/2022/01/21/help-im-having-a-migraine-attack-a-long-post-with-ideas-for-what-to-try/

"Even if Americans have largely abandoned masking for now, they’re not letting go of remote work".

krcoombs — 2023-07-04 18:09:12 UTC

https://jessicawildfire.substack.com/p/remote-work-hurts-corporate-wallets?utm_medium=email

"The pandemic changed the thinking of a number of employers, including many permitting work from home two- or three-days per week... using telework as a reasonable accommodation doesn’t seem like special treatment.”

krcoombs — 2023-07-06 17:26:09 UTC

https://news.bloomberglaw.com/daily-labor-report/covids-remote-work-experience-is-slowly-changing-disability-law

"More than three years after the COVID-19 pandemic shut down schools, one in 20 K-12 educators believe they have long COVID. Another 14 percent think or know they previously had it but eventually recovered". N=1156

krcoombs — 2023-07-06 17:32:55 UTC

https://www.edweek.org/teaching-learning/the-pandemic-has-faded-from-view-but-many-educators-still-have-long-covid/2023/06

Hispanic and Black respondents were more likely than other racial or ethnic groups to report COVID-19 symptoms lasting three months or longer, according to the U.S. Census Bureau’s Household Pulse Survey (HPS).

krcoombs — 2023-07-06 22:01:30 UTC

https://www.census.gov/library/stories/2023/05/long-covid-19-symptoms-reported.html Responses June-Dec 2022

"I think there is a concerted effort – politically – to say that COVID-19 is all over. But I don’t think you can say it is all over unless there are workplace protections".

krcoombs — 2023-07-08 15:30:17 UTC

https://www.ioshmagazine.com/2023/07/03/seriousness-long-covid

" Long-term COVID can be an independent source of cognitive and functional impairment as well as excess burden and disability for individuals who already display MCI or dementia"

krcoombs — 2023-07-08 21:22:29 UTC

https://lumindidsc.org/wp-content/uploads/2022/10/Long-COVID-and-MCI-Statement-v-Oct-5-2022-FINAL.pdf

England: "Most SARS-CoV-2 associated hospital admissions in children and adolescents in England were due to SARS-CoV-2 or SARS-CoV-2 was a contributory factor". N= 3.2 million

krcoombs — 2023-07-10 22:27:52 UTC

https://www.bmj.com/content/382/bmj-2022-073639
Electronic health care record data, 7/20-2/22.

"Post COVID-19 symptoms are common, also among young adults in the general population. We identified no major risk factors including lifestyle and chronic diseases present before the pandemic for being affected, suggesting other factors and mechanisms to be involved (including genetics and immune response). N=2022

krcoombs — 2023-07-13 02:57:09 UTC

https://www.nature.com/articles/s41598-023-38315-2

"In 2021, nearly 15% of rural residents reported having a disability, compared to 12.6% of urban people".

krcoombs — 2023-07-18 00:34:22 UTC

https://dailyyonder.com/census-rural-americans-have-higher-rates-of-disabilities-than-urban-dwellers/2023/07/17/

"For Black disabled people, self-love is not simply an aesthetic or a trend but a fundamental lifeline we tap into through unapologetic advocacy work and collective support and remembering. As our ancestors have taught us, we are all we have".

krcoombs — 2023-07-18 00:38:21 UTC

https://www.cosmopolitan.com/entertainment/a39355245/imani-barbarin-black-disabled-activist-self-love/

"As every organ system is reliant on homoeostasis of the endothelium and appropriate immune responses, it is perhaps unsurprising that multisystem dysfunction ensues for many individuals".

krcoombs — 2023-07-18 13:23:54 UTC

https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(23)00239-4/fulltext

"There still exists a general lack of awareness and understanding of the range and complexity of disabilities, conditions or chronic illnesses that are not immediately apparent to others, resulting in a lack of conversation and support”.

krcoombs — 2023-07-21 00:35:57 UTC

https://www.forbes.com/sites/berenicemagistretti/2023/07/17/why-we-need-to-bring-more-visibility-to-invisible-disabilities-and-illnesses/?sh=51dd87726177

"The information provided can also apply to individuals with Long COVID and other multi-system chronic complex illnesses that have post-exertional malaise (PEM) symptoms. Every home with a person with ME/CFS should have a Crash Care Kit".

krcoombs — 2023-07-21 00:44:05 UTC

https://batemanhornecenter.org/crash-care-kit-essentials/

"Using samples stored in the deep freeze from two studies done in 2014/2015, one of which examined the effects of exercise on leaky gut, they took a deep dive into the immune system, the gut and the metabolism".

krcoombs — 2023-07-21 01:21:51 UTC

https://www.healthrising.org/blog/2023/07/19/convergence-gut-immune-metabolic-post-exertional-malaise-chronic-fatigue-syndrome/

Building an emergency kit, being informed and planning ahead

krcoombs — 2023-07-21 14:44:22 UTC

https://www.ready.gov/disability

"We have actually spent only a small fraction of that billion dollars because it's intended to last for many years so that we can do all the research we need to do. We have to always balance the need for rigorous and reproducible science with the need for speed".

krcoombs — 2023-07-21 19:11:05 UTC

https://youtu.be/u1Y5tm-U2u8

"Having too few trial participants from racial and ethnic minority groups contributes to low public participation overall in clinical research, reduces the chances of underserved communities to gain access to potentially lifesaving experimental therapies and helps reinforce existing health inequities".

krcoombs — 2023-07-21 20:05:47 UTC

https://www.usnews.com/news/health-news/articles/2023-07-18/after-covid-a-continued-push-for-drug-trial-diversity

This guide for health professionals describes the kinds of medical evidence the Social Security Administration needs to evaluate disability claims filed by individuals with long-term health effects of COVID-19, known as Long COVID or Post-COVID Conditions (PCC).

krcoombs — 2023-07-22 14:42:37 UTC

https://www.ssa.gov/disability/professionals/documents/EN-64-128.pdf

"70 percent of the 605 girls, women, nonbinary and trans people who have periods surveyed said their long Covid symptoms, such as breathlessness and fatigue, varied in intensity and form with their menstrual cycles".

krcoombs — 2023-07-23 21:56:25 UTC

https://inews.co.uk/news/science/periods-can-worsen-long-covid-symptoms-study-suggests-2499006

7/21/23: The persistent symptoms in children are similar to adults. Common symptoms reported: persistent fatigue, headache, shortness of breath, sleep disturbances, gastrointestinal symptoms, altered sense of smell, cardiopulmonary injury, neurocognitive impairment, and new-onset diabetes may occur.

krcoombs — 2023-07-24 14:46:26 UTC

https://www.covid19treatmentguidelines.nih.gov/management/clinical-management-of-children/special-considerations-in-children/
LC burden on CYP may be large d/t overall rate of infx in CYP. Increased age increases the likelihood of LC.

12/22 NIH: This section outlines the COVID-19 Treatment Guidelines (i.e., pediatric patients aged <18 years) with mild to moderate COVID-19.

krcoombs — 2023-07-24 15:01:27 UTC

https://www.covid19treatmentguidelines.nih.gov/management/clinical-management-of-children/nonhospitalized-children-therapeutic-management/

"Finally, stop getting angry at the messengers and advocates and demanding we do everything. We can’t. This is a group effort. We need more people to join us, not nitpick us or critique the only solutions available. Stop letting the elite off the hook. Stop making excuses for them and then laying into the people who are trying to help".

krcoombs — 2023-07-25 00:29:49 UTC

https://ko-fi.com/post/A-Heightened-Sense-of-Risk-A-Covid-FAQ-with-300-I2I7NJ68B

So, what can you do as a healthcare professional? Listen to your patients -- and believe them, Educate yourself, Advocate

krcoombs — 2023-07-25 00:45:20 UTC

"COVID-19 can potentially lead to the development of persistent asthma symptoms, while individuals with pre-existing asthma may experience worsened symptoms after recovering from the infection".

krcoombs — 2023-07-25 22:15:47 UTC

https://www.healthopedia.com/asthma/guides/unraveling-the-connection-between-covid-19-and-asthma-implications-risks-and-insights/

"The stark disparities in material hardship between people with and without long COVID suggest that in addition to fast-tracking research and increasing health care access, policymakers must address social determinants of health and bolster the safety net for those who become sick to equitably address the emergence of this new and significant disability".

krcoombs — 2023-07-25 22:41:22 UTC

https://www.urban.org/research/publication/employment-and-material-hardship-among-adults-long-covid-december-2022

COVID-19 Response Reports + link to Plain Language LC Fact Sheet

krcoombs — 2023-07-26 13:47:33 UTC

https://www.publichealth.va.gov/n-coronavirus/COVID_19_Response_Reports.asp
https://www.publichealth.va.gov/n-coronavirus/docs/Fact-Sheet-Veteran-Facing-Long-COVID-0083022-FINAL.pdf#

Veterans Affairs (VA) research during the COVID-19 pandemic

krcoombs — 2023-07-26 13:53:01 UTC

https://www.research.va.gov/covid-19.cfm#studies

Rural Health Information Hub: Funding, Models & Innovations, Resources, Rural Monitor, Toolkits, Webinars

krcoombs — 2023-07-26 13:57:01 UTC

https://www.ruralhealthinfo.org/search?q=long+COVID

"These findings are consistent with the notion that novel social conditions induced by the pandemic have disadvantaged women in academia even more than before".

krcoombs — 2023-07-26 19:05:57 UTC

https://elifesciences.org/articles/85427

This resource aims to equip you with knowledge and insights from caregiver to caregiver on ways to support and alleviate the suffering of the person experiencing the crash (referenced below as the patient).

krcoombs — 2023-07-26 22:21:03 UTC

https://batemanhornecenter.org/caregiver-guidance/

“Our safety net isn’t equipped for people with long COVID”

krcoombs — 2023-07-26 23:55:46 UTC

https://www.marketwatch.com/story/meals-skipped-lights-shut-off-long-covid-linked-to-severe-financial-strains-researchers-say-30149eed

"It feels like COVID has been neglected by the White House and others in power. We have these conversations about Disability Pride and the ADA. We haven’t heard about the fact that COVID has disabled and killed millions of people in our community. And my guess is we won’t, because they want to act like COVID is over".

krcoombs — 2023-07-27 12:03:32 UTC

https://19thnews.org/2023/07/americans-with-disabilities-act-anniversary-covid-uncertainty/

Bipartisan Long COVID Support Act would: Accelerate Long COVID research, Improve understanding of Long COVID treatment efficacy and disparities, Educate Long COVID patients and medical providers. 7/27/23

krcoombs — 2023-07-27 17:42:50 UTC

kaine.senate.gov/press-releases/kaine-and-young-introduce-bill-to-support-americans-living-with-long-covid

"Why this dismissal? This piece offers a brief cultural history, but there are three main factors—reductionism, sexism, and capitalism—all blending together into a cocktail of stigma". Paywall

krcoombs — 2023-07-27 18:14:38 UTC

https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/

"While it's hard to say exactly what percentage of kids develop long COVID, the evidence suggests it's between 10% and 20%. So the new findings align with that. It's really worrisome because that's a very large number of kids".

krcoombs — 2023-07-28 00:45:03 UTC

1 in 5 Kids Had Long COVID Symptoms Months After Infection (usnews.com)

Memo: Reasonable accommodations after the end of the COVID-19 Public Health Emergency.

krcoombs — 2023-07-29 19:30:16 UTC

https://www.mass.gov/news/memo-reasonable-accommodations-after-the-end-of-the-covid-19-public-health-emergency

National Academies report: looking at how poverty and racism affect health to examine how past federal policies might have created health disparities and what new policies might reduce them.

krcoombs — 2023-07-29 20:30:38 UTC

https://www.statnews.com/2023/07/27/health-disparities-national-academies-federal-government/

"The COVID-19 saga, which is still not entirely over and is no longer considered an emergency, is inextricably linked with that of disability rights. It has disproportionately afflicted disabled individuals and, as that BLS data reveals, it has created a whole new group of disabled people".

krcoombs — 2023-07-31 13:44:42 UTC

https://www.salon.com/2023/07/30/disability-rates-rose-sharply-during-the-pandemic-long-is-largely-to/

“Our patient and community representatives have provided critical input to help us ensure that the results of these trials are applicable to people across the country and become available as soon possible,” said Kanecia Zimmerman, M.D.

krcoombs — 2023-07-31 22:48:24 UTC

https://recovercovid.org/updates/recover-clinical-trials

The trials that launched today will focus on viral persistence and cognitive dysfunction using “platform protocols,” a term used to describe the adaptive design of these trials. NIH RECOVER

krcoombs — 2023-08-01 02:32:27 UTC

https://www.nih.gov/news-events/news-releases/nih-launches-long-covid-clinical-trials-through-recover-initiative-opening-enrollment

“As our nation continues to make strides in combating COVID-19, it is crucial that we address the impact of Long COVID and provide resources to those in need,” said HHS Secretary Becerra.

krcoombs — 2023-08-01 19:40:57 UTC

https://www.hhs.gov/about/news/2023/07/31/hhs-announces-formation-office-long-covid-research-practice-launch-long-covid-clinical-trials-through-recover-initiative.html https://abcnews.go.com/Health/biden-administration-opens-new-office-study-long-covid/story?id=101873413

Unispace found that nearly half (42%) of companies with return-to-office mandates witnessed a higher level of employee attrition than they had anticipated. And almost a third (29%) of companies enforcing office returns are struggling with recruitment

krcoombs — 2023-08-02 02:36:46 UTC

https://fortune.com/2023/08/01/research-damaging-results-mandated-return-to-office-worse-than-we-thought-rto-remote-work-careers-leadership-gleb-tsipursky/

7 Part Videos: Post-Exertional Malaise: Defining PEM/PESE: (Post Exertional Malaise/Post Exertional Symptom Exacerbation)

krcoombs — 2023-08-04 03:14:47 UTC

https://www.youtube.com/watch?v=wwgwHzgAz7s&list=PL-OZ_5Cqdc309Gp1hO4PpUKQIsTlyUf04

This notice establishes the Office of Long COVID Research and Practice in OASH (Office of the Assistant Secretary for Health).

krcoombs — 2023-08-06 19:21:34 UTC

https://www.federalregister.gov/documents/2023/08/01/2023-16251/establishment-of-the-office-of-long-covid-research-and-practice

"Fully recognize aerosol transmission of SARS-CoV-2 and other respiratory pathogens, maintain and strengthen respiratory protection, infection control guidance that is clear and explicit".

krcoombs — 2023-08-08 02:02:06 UTC

https://act.nnu.org/letter/Urge-the-CDC-and-HICPAC-recognize-aerosol-transmission/

"Before COVID, this debilitating condition was not widely talked about. But during the pandemic, we’ve been learning about the strong similarities with long COVID".

krcoombs — 2023-08-08 12:04:07 UTC

https://theconversation.com/what-is-pots-and-how-is-it-related-to-long-covid-208280

Americans with Disabilities Act (ADA) compliance assistance and practical job accommodation strategies for returning individuals with disabilities to work during the COVID-19 pandemic, ie., return to the work environment, work at home, or access leave when other accommodations are not reasonable.

krcoombs — 2023-08-09 00:16:42 UTC

https://askjan.org/topics/COVID-19.cfm

"For researchers interested in the topic, however, it’s a major loss. The program was deemed potentially so important that it would be supported through the agency’s Common Fund".

krcoombs — 2023-08-10 01:27:57 UTC

https://kffhealthnews.org/news/article/the-nih-ices-a-research-project-is-it-self-censorship/

"Children’s Hospital of Philadelphia receiving its first grant from the Bill & Melinda Gates Foundation. Could genes of the DNA within the mitochondria, called the mtDNA, in certain individuals and populations lead to more severe symptoms associated with SARS-CoV-2 infection than others"?

krcoombs — 2023-08-10 02:57:35 UTC

https://www.research.chop.edu/cornerstone-blog/tableside-chat-about-mitochondria-leads-to-gates-foundation-grant-for-covid-19-research

"Now, a Madrid-based study suggests that even the health of men's sperm may be affected months after recovering from a COVID infection—or longer".

krcoombs — 2023-08-10 03:10:22 UTC

https://getmegiddy.com/covid-19-sperm-health

"We need a full and transparent investigation of the U.S. government's Covid response to ensure accountability and better protection from future disasters". S.1489's Covid Task Force

krcoombs — 2023-08-10 13:38:43 UTC

https://actionnetwork.org/letters/mbc_taskforce23?fbclid=IwAR3hML99mh09fkRmbuVUwj_4gLxxSRDQIoRA6fL_MKTYpqavfSCFd8ysS8Q

"Our research uncovers multiple obstacles – including employment barriers, financial exclusion, and public safety net constraints – that may be undermining their financial health".

krcoombs — 2023-08-10 20:55:38 UTC

https://finhealthnetwork.org/research/the-financial-health-of-people-with-disabilities/

Sick Mitochondria as a Root Cause, The Big Miss: NIH RECOVER

krcoombs — 2023-08-13 21:48:56 UTC

https://erictopol.substack.com/p/long-covid-mitochondria-the-big-miss?utm_medium=email
https://www.medscape.com/viewarticle/995433

"Given the symptom overlap between concussion/mTBI and long COVID, best practices and evidence-based techniques for the treatment of concussion/mTBI can inform treatment approaches to manage symptoms and reduce the negative impact of long COVID".

krcoombs — 2023-08-15 19:20:38 UTC

https://www.psychiatrictimes.com/view/persistent-neurocognitive-and-neuropsychiatric-symptoms-post-covid

1899 – 2023 Major Epidemics of the Modern Era.

krcoombs — 2023-08-17 13:56:44 UTC

https://www.cfr.org/timeline/major-epidemics-modern-era

Learn about the history of major disease outbreaks, epidemics and pandemics, as well as the impact vaccines and research had on many infectious diseases.

krcoombs — 2023-08-17 13:57:57 UTC

https://www.mayoclinic.org/diseases-conditions/history-disease-outbreaks-vaccine-timeline

While experts are still learning about SARS-CoV-2 in animals, there is no evidence that animals play a significant role in spreading the virus to humans.

krcoombs — 2023-08-17 14:00:08 UTC

https://www.aphis.usda.gov/aphis/newsroom/stakeholder-info/sa_by_date/sa-2023/white-tailed-deer-research-sars-cov-2

"Time will tell but one could envision a major NIH effort with regards to the mitochondria in ME/CFS".

krcoombs — 2023-08-17 18:35:57 UTC

https://www.healthrising.org/blog/2023/08/16/nih-mitochondria-chronic-fatigue-syndrome/

“Are we ever going to find solutions for Long COVID if patient voices aren’t being listened to?”

krcoombs — 2023-08-20 19:30:52 UTC

https://coviddatadispatch.com/2023/08/20/the-nih-says-it-inappropriately-censored-long-covid-patients-on-social-media/

"New Ontario study has found that retirement- and long-term-care home residents infected during the first Omicron wave were 20 times more likely to get reinfected by the virus than those who avoided a prior infection". N=750

krcoombs — 2023-08-22 02:43:34 UTC

https://www.thestar.com/news/canada/some-seniors-infected-with-omicron-variants-were-more-susceptible-to-reinfection-not-less-mcmaster-study/article_8d2e8c17-9587-508c-b37f-d68c997f1322.html

Incidence of new-onset persistent hypertension in patients with COVID-19 is higher than those with influenza, likely constituting a major health burden given the sheer number of patients with COVID-19.

krcoombs — 2023-08-22 03:02:16 UTC

https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.123.21174

“Many of the people and communities hardest-hit by the pandemic had little choice in their exposure” because they got covid where they lived or worked, Sosin said. “Limiting our focus on the choices that people make — rather than on the broader structural and social forces that shape risk — really will set us up for the same failures in the future.”

krcoombs — 2023-08-24 02:40:13 UTC

https://kffhealthnews.org/news/article/painful-covid-pandemic-lessons-mandy-cohen-north-carolina-cdc/

"Our study has uncovered a fascinating trend among long COVID patients that we believe carries much wider relevance: profound self-reflection on the meaning of a life, triggered by a major disruption to their existing narrative".

krcoombs — 2023-08-25 11:09:23 UTC

https://theconversation.com/existential-crisis-how-long-covid-patients-helped-us-understand-what-its-like-to-lose-your-sense-of-identity-and-purpose-in-life-211223

The Appropriations Committee seeks to cut BILLIONS from our federal health agencies, bringing devastating consequences to those enduring the life-altering and often disabling effects of infection-associated chronic conditions like Long COVID.

krcoombs — 2023-08-29 18:44:02 UTC

https://p2a.co/sz0vjme

"But one of the biggest issues is that we continue to treat COVID like the flu. As in, get a shot once each year and you’re good to go. Dr. Birx called this a “mistake” and went on to remind listeners that after a vaccination or illness “the protection against infection is extraordinarily short-lived.”

krcoombs — 2023-08-30 12:18:27 UTC

https://themessenger.com/health/deborah-birx-trump-covid-adviser

"So this conversation centers on the myths — and realities — associated with how we remember the pandemic". (Ezra Klein show)

krcoombs — 2023-08-31 02:51:43 UTC

It’s Time to Talk About ‘Pandemic Revisionism’ https://www.nytimes.com/2023/08/29/opinion/ezra-klein-podcast-katelyn-jetelina.html?smid=nytcore-android-share

"We welcome submissions of primary research with a focus on all aspects of post COVID-19 condition and its direct or indirect implications for society". Submission deadline 14 May 2024

krcoombs — 2023-08-31 19:27:52 UTC

https://www.nature.com/collections/jgahhdgjgh

"The Pandemic Legal Assistance Network (PLAN) is a national network of attorneys who have volunteered to provide pro bono assistance to individuals who have been affected by COVID-19. Individuals who need legal help can use the form below to apply to participate in the program".

krcoombs — 2023-08-31 19:28:33 UTC

Advancing understanding of chronic illness following infection and identifying novel biomarkers of Lyme disease and Long COVID.

krcoombs — 2023-09-01 13:18:01 UTC

https://talresearchgroup.mit.edu/mitmaestro

Physical Therapists Living With Long COVID, Part 1: Defining the Indefinable

krcoombs — 2023-09-01 13:22:15 UTC

https://www.jospt.org/do/10.2519/jospt.blog.20210203/full/

RECOVER clinical trials use platform protocols that allow researchers to study different interventions, or possible treatments, at the same time. (Current trials: Paxlovid & Cognitive intervention using Brain HQ video game).

krcoombs — 2023-09-01 15:46:06 UTC

https://trials.recovercovid.org/?utm_source=ACC+Communications&utm_campaign=8f714ce3f3-RECOVER_REPORT_AUGUST_2023&utm_medium=email&utm_term=0_-60bdab5a5f-%5BLIST_EMAIL_ID%5D

"If you have Long Covid, know someone suffering from Long Covid, treat patients with Long Covid, or care about the impacts of COVID on our global health, medical systems, and the economy-- We need you to sign and share this letter to the United Nations asking that they recognize Long Covid Awareness internationally every year as people around the world continue to be infected by COVID".

krcoombs — 2023-09-01 15:55:18 UTC

https://actionnetwork.org/letters/ask-the-united-nations-to-officially-recognize-international-long-covid-awareness-day-and-month?source=direct_l

"How can clinicians recognize and acknowledge the injustices often experienced by COVID long-haulers"?

krcoombs — 2023-09-02 03:37:42 UTC

https://www.psychiatrictimes.com/view/dismantling-health-care-discrimination-toward-long-covid

"Research presented at the Alzheimer’s Association International Conference suggests even mild cases of COVID-19 may be associated with cognitive deficits months after recovery".

krcoombs — 2023-09-04 13:01:20 UTC

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8432319/

"While older people are not more prone to long Covid overall, Dr. Al-Aly’s research using large Veterans Affairs databases shows that they are more at risk for four particular clusters of symptoms".

krcoombs — 2023-09-05 12:51:09 UTC

Long Covid Poses Special Challenges for Seniors https://www.nytimes.com/2023/09/03/health/long-covid-seniors.html?smid=nytcore-android-share

"We suggest that one of these recommendations, the formal designation of people with disabilities as a US health disparity population, can be enacted immediately, which would spur new federal investment in disability-based disparities research".

krcoombs — 2023-09-05 23:25:35 UTC

“Early testing is key to making these drugs work,” he says. “It’s always been the Achilles’ heel of these antiviral drugs that most people don’t get tested—or they don’t have access to testing”.

krcoombs — 2023-09-06 02:08:10 UTC

https://www.yalemedicine.org/news/13-things-to-know-paxlovid-covid-19 https://www.yalemedicine.org/news/covid-19-treatment-drugs

Long COVID Community letter from Office of Long COVID Research and Practice. (OLCRP) "Where to find the resources and supports you or someone you care for need, we’ve made a list of a few our federal partners have developed. You can check them out below".

krcoombs — 2023-09-06 20:10:18 UTC

https://tinyurl.com/yc79ufm9

"It is often difficult to know when a firefighter is well enough to return to work, how to provide appropriate support to department members who are suffering from prolonged symptoms, and how to meet the operational needs of the department given the number of firefighters who may be out because of acute infection or chronic symptoms".

krcoombs — 2023-09-07 18:54:47 UTC

https://www.fireengineering.com/health-safety/long-covid-a-smoldering-problem-in-the-fire-service/

"Given all these factors and that even asymptomatic people can transmit Covid-19, it makes zero sense for hospitals, nursing homes and other healthcare facilities to eliminate masking. We’ll find out in November if HICPAC has heard the public outcry in response to its plans."

krcoombs — 2023-09-07 22:37:59 UTC

https://www.forbes.com/sites/judystone/2023/09/07/where-have-all-the-masks-gone/?sh=2a53fba66c94

Register now to access free virtual care and treatment for COVID-19, 24 hours a day, 7 days a week. 6 free Rapid Antigen tests shipped to home.

krcoombs — 2023-09-10 18:37:53 UTC

https://aspr.hhs.gov/TestToTreat/Pages/default.aspx

“One searches for explanations for the odd fact that Americans took little notice of the pandemic,” he wrote, “and then quickly forgot whatever they did notice.”

krcoombs — 2023-09-10 21:39:20 UTC

Why Are There Almost No Memorials to the Flu of 1918? https://www.nytimes.com/2020/05/14/business/1918-flu-memorials.html?smid=nytcore-android-share

PEDS: "The presence of headache should be screened in all patients with long COVID headache. Current treatment strategies are based on existing recommendations for other headache disorders".

krcoombs — 2023-09-11 13:09:08 UTC

">https://danilobuonsenso.substack.com/p/long-covid-chronic-persistent-difficult?utm_source=profile&utm_medium=reader2

"In this 41-patient cohort study from a chronic pain management practice, the use of either unilateral or bilateral stellate ganglion block (SGB) was explored to manage symptoms associated with long COVID-19 syndrome. Results indicated that a substantial proportion of patients (86%) experienced a reduction of their symptoms following SGB treatment".

krcoombs — 2023-09-13 19:08:22 UTC

https://www.cureus.com/articles/184194-stellate-ganglion-block-relieves-long-covid-19-symptoms-in-86-of-patients-a-retrospective-cohort-study#!/

"Workforce participation remains below pre-pandemic levels. We have 1.9 million fewer Americans working today compared to February of 2020. Vermont has 41 available workers for every 100 open jobs. VT/NH/MA are categorized as most severe in NE".

krcoombs — 2023-09-13 21:07:06 UTC

https://www.uschamber.com/workforce/understanding-americas-labor-shortage +Most Severe: MD, VA, AR, AL, MT, ND, SD, NE,

Liverpool: "This animation summarises some of the key findings from a research project looking at gendered experiences of health and social care for people with Energy Limiting Conditions or Chronic Illnesses. It outlines the impacts that medical disbelief has on people's lives and some of the ways in which forms of discrimination such as sexism, racism, homophobia and transphobia play a part in this".

krcoombs — 2023-09-14 22:34:46 UTC

https://youtu.be/AtdpgiNs_xg

"So far, insights gained from RECOVER research have: Characterized the risk of long COVID for different strains, Explored racial and ethnic disparities, Identified potential risk factors for the condition that may help inform future treatment".

krcoombs — 2023-09-15 20:55:21 UTC

https://www.medpagetoday.com/opinion/second-opinions/106296

"In addition to organizing, strategizing, and building relationships, there may be times when activists may say some things you find uncomfortable in an attempt to hold public figures in powerful positions accountable even if they are not present to defend themselves. If not by us then who? If not at events like this then when? Creating change can’t always happen in civil or respectful ways".

krcoombs — 2023-09-17 21:29:43 UTC

"https://disabilityvisibilityproject.com/2023/09/14/adventures-in-public-speaking/

"They estimate that in the first three years of the pandemic, around 311,000 minor children in the United States lost a parent or other in-home primary caregiver, such as a grandmother, to COVID-19. Roughly a quarter of those children – or about 76,000 – are Black. Only 14% of America’s youth are Black, illustrating the disproportionate impact of the pandemic on Black families".

krcoombs — 2023-09-17 21:42:35 UTC

https://andscape.com/features/the-coronavirus-pandemics-ongoing-legacy-covid-orphans/

krcoombs — 2023-09-17 21:45:49 UTC

"9 grant awards of $1 million each for up to 5 years to support existing multidisciplinary Long COVID clinics across the country to expand access to comprehensive, coordinated, and person-centered care for people with Long COVID, particularly underserved, rural, vulnerable, and minority populations that are disproportionately impacted by the effects of Long COVID".

krcoombs — 2023-09-21 01:27:26 UTC

https://www.hhs.gov/about/news/2023/09/20/hhs-awards-45-million-grants-expand-access-care-people-long-covid.html

"Post-acute infection syndromes refer to a group of chronic health conditions that can develop after the acute phase of a viral, bacterial or parasitic infection".

krcoombs — 2023-09-21 02:09:15 UTC

https://yaledailynews.com/blog/2023/09/19/new-infection-and-immunity-center-looks-into-long-covid-19-chronic-lyme-disease/

ADA Training: " Ensuring Equitable Access During Inequitable Times – Resources from the Vermont Center for Independent Living" April 2023 webinar

krcoombs — 2023-09-22 14:12:01 UTC

https://whn.global/ensuring-equitable-access-vcil/

With thanks to the Vermont Center for Independent Living. File Civil Rights Complaints: If your request is denied, file a complaint!

krcoombs — 2023-09-22 14:12:42 UTC

https://whn.global/what-to-do-when-your-ada-request-is-denied-in-healthcare/

"This structure is analogous to our own experience as patient representatives in the NIH-funded RECOVER research initiative. In this capacity, we find ourselves at the intersection of scientific process and personal need, between supporting the processes of rigorous, inclusive, and nuanced scientific research (which takes time), and desiring solutions for ourselves, our families, and the community at large (which we want as soon as possible)".

krcoombs — 2023-09-22 19:33:22 UTC

https://elifesciences.org/articles/86043

"In health care, this kind of treatment is a reality for disabled people, women, and especially women of color. Some 1 in 5 patients have reported experiencing discrimination in health care. Black people, who have been disproportionately affected by the pandemic along with Latinx people, consistently received poorer care in hospitals than their white counterparts, which correlated with higher mortality rates".

krcoombs — 2023-09-24 16:17:12 UTC

https://prismreports.org/2023/09/21/women-of-color-long-covid-nightmare/

"Announcement of Decision to Designate People with Disabilities as a Population with Health Disparities".

krcoombs — 2023-09-26 16:53:19 UTC

https://nimhd.nih.gov/about/directors-corner/messages/health-disparities-population-designation.html

"Reflecting patterns seen throughout the COVID-19 pandemic, intended uptake is largely divided along party lines, most insured people now say they are unsure whether their health insurance covers either in-home, rapid COVID-19 tests (55%) or PCR COVID-19 tests (61%)".

krcoombs — 2023-09-28 00:21:44 UTC

https://www.kff.org/coronavirus-covid-19/poll-finding/kff-covid-19-vaccine-monitor-september-2023/

"According to the EEOC’s lawsuit, a sales associate who had ongoing symptoms related to a COVID-19 infection requested additional leave of approximately one to two weeks. Appliance Factory refused to grant the accommodation and failed to communicate with employee about the precise nature of her condition or what alternative accommodation could be made to meet her needs. When the sales associate’s leave expired, Appliance Factory terminated her".

krcoombs — 2023-09-28 20:20:32 UTC

https://www.eeoc.gov/newsroom/eeoc-sues-appliance-factory-disability-discrimination

"Many workers who developed long COVID continued receiving medical care a year after their infections. At an average of 18 months of post-infection experience, workers with long COVID received more than 20 weeks of temporary disability benefits and received on average about $29,000 in medical care. This was more than 10 times higher than the average medical payment for COVID-19 claims that didn't develop into long COVID".

krcoombs — 2023-09-29 20:15:47 UTC

https://www.shrm.org/resourcesandtools/legal-and-compliance/employment-law/pages/what-employers-should-know-long-covid-19.aspx

"However, in her research, she found that around 15% of those presenting with symptoms at 3 months also had symptoms after 12 months. Although few will need hospitalization, for this small minority, poor health may mean missing out on school, sports and social time with their friends".

krcoombs — 2023-10-05 15:16:27 UTC

https://www.who.int/europe/news/item/05-10-2023-what-is-wrong-with-me---children-face-a-frustrating-lack-of-answers-about-long-covid

"At PolyBio, our collaborative research projects on Long COVID, ME/CFS and other infection-associated chronic conditions are moving full speed ahead. We are also conceptualizing and supporting an increasing number of experimental medicine clinical trials, and working directly with MDs and the community to innovate patient care. Join us for an afternoon of project updates, insights, and discussion".

krcoombs — 2023-10-05 21:07:56 UTC

https://polybio.org/polybio-fall-symposium-schedule/

twitter live stream: https://twitter.com/patientled/status/1715404760138866788?t=7y-pqINeOTnBddO-5O9pyQ&s=19

"...doctors are concerned about vulnerable patients in hospitals, which are by nature meeting points for all sorts of disease-causing pathogens, not just SARS-CoV-2, the virus that causes COVID. Hospitals are also at elevated risk of things like long COVID, which can occur even in the vaccinated, young and otherwise healthy".

krcoombs — 2023-10-05 21:38:49 UTC

https://www.salon.com/2023/10/05/mask-mandates-are-returning-to-some-hospitals-should-they-be-there-to-stay/

COVID-19 American History Project through National Library of Congress: research guide, collaboration with StoryCorps to tell experience, oral history with frontline workers.

krcoombs — 2023-10-05 23:47:56 UTC

https://guides.loc.gov/covid-19-folklife?loclr=blogflt

"While research on long COVID and what might lead to it is ongoing, one potential cause may be overexertion during the time of infection".

krcoombs — 2023-10-06 15:15:21 UTC

https://archive.ph/2023.10.06-034256/https://www.runnersworld.com/health-injuries/a45454046/why-you-shouldnt-run-with-covid/

"As the fourth year of the COVID-19 pandemic is coming to a close, the WSWS spoke to Dr. Murray once again to address the question if the pandemic is ongoing or have we arrived at the endemic phase of COVID-19 and what are the implications of these designations for the world’s population".

krcoombs — 2023-10-07 16:20:31 UTC

https://www.wsws.org/en/articles/2023/10/07/yhmh-o07.html

Diagrams: Review of common symptoms of #MECFS and of PEM, its pathognomonic symptom

krcoombs — 2023-10-07 17:29:44 UTC

https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

Memorial Sloane Kettering Library: Detailed information and resources on the long-term health consequences of COVID-19 infection and the broad social impacts of the COVID-19 pandemic.

krcoombs — 2023-10-10 18:24:04 UTC

https://libguides.mskcc.org/CovidImpacts/LongCovidRisk

"Rather than damping down panic, public health messaging needs to discuss risks honestly and focus on reducing spread. Despite messages to the contrary, our situation remains unstable, because the virus continues to evolve rapidly, and vaccines alone cannot slow this evolution".

krcoombs — 2023-10-15 17:08:55 UTC

https://www.thenation.com/article/society/covid-pandemic-panic-calm-advice/

“Mayo didn’t pull any punches regarding ME/CFS. Its hard-hitting intro: "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection” that “is common and debilitating” which produces a “lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure” will surely open eyes and ears."

krcoombs — 2023-10-15 23:00:59 UTC

.https://www.healthrising.org/blog/2023/10/15/mayo-clinic-chronic-fatigue-syndrome-mecfs/

Interpretation: LC has been associated with substantial, persistent healthcare utilisation and cost over the last 3 years. Future funding, resources and staff for LC prevention, treatment and research must be prioritised to reduce sustained primary and secondary healthcare utilisation and costs.

krcoombs — 2023-10-20 16:18:54 UTC

"At times symptoms improve marginally with hormone therapy, although for some they don’t. “All I can do right now is say some of your symptoms may also be related to your ongoing long Covid symptoms. And right now, there are no approved treatments for long Covid. So it means really just symptomatic management”.

krcoombs — 2023-10-20 21:54:10 UTC

https://www.statnews.com/2023/10/20/long-covid-menopause-research/

"Heart and lung testing, like other specialized tests in RECOVER, requires an additional consent form to be signed. Before this research begins, our team will work with community partners and RECOVER representatives to ensure the consent form properly reflects concerns about post-exertional malaise. In research, the safety and comfort of patients is of utmost importance".

krcoombs — 2023-10-22 18:32:00 UTC

https://www.cuimc.columbia.edu/news/long-covid-kids-what-can-research-reveal

"The silver lining to COVID is having people hear about ME/CFS.” Sirot suffers from the disease and was inspired to invest $1 million in Iwasaki’s research after reading about her efforts to discover a biomarker for ME/CFS".

krcoombs — 2023-10-27 19:47:22 UTC

https://medicine.yale.edu/news-article/mecfs-long-covid-and-chronic-lyme-disease-research-aided-by-dollar3-million-in-donor-gifts-to-yale-school-of-medicine/

CDC: Infections can sometimes leave people with symptoms that last for weeks to months or longer, even after appropriate treatment. Some of these symptoms are well-recognized and specific to the type of infection, for example, loss of smell and COVID-19. Other symptoms are unexplained and general (e.g., fatigue or difficulty thinking). Similar symptoms can follow many different types of infections.

krcoombs — 2023-10-28 20:14:35 UTC

https://www.cdc.gov/ncezid/what-we-do/our-topics/chronic-symptoms.html

Last Reviewed: October 25, 2023

"There are quite a few case reports of PANS (or OCD, obsessive-compulsive disorder) linked with previous SARS-CoV-2 infection, including asymptomatic ones or mild diseases. The typical described cases concern children or adolescents that developed sudden onset of OCD symptoms along with deteriorating scholastic performance, irritability and enuresis, post SARS-CoV-2 infection".

krcoombs — 2023-10-30 16:54:58 UTC

https://danilobuonsenso.substack.com/p/panspandas-what-are-them-and-what

"But recognizing health as a human right—emphasizing the opportunity for health—and supporting the patient–physician relationship and systems that promote equitable access to appropriate health care for all help ground and reinvigorate the discussion".

krcoombs — 2023-10-31 18:08:26 UTC

https://www.acpjournals.org/doi/10.7326/M23-1900

A Position Paper From the American College of Physicians

"In patients with neuropsychiatric disorders refractory to standard therapy who have systemic symptoms, underlying MCAS should be considered in the differential diagnosis. This is especially the case if they have comorbid POTS, other types of dysautonomia, and/or hEDS".

krcoombs — 2023-11-01 02:49:08 UTC

https://www.mdpi.com/2075-4426/13/11/1562

"This will allow research and clinical trials centered on SARS-CoV-2 persistence as a driver of Long COVID to move to the next phase".

krcoombs — 2023-11-01 13:07:42 UTC

http://tinyurl.com/3ensubs2

"They have come under considerable criticism from several national advocacy groups over their draft guidelines, which suggest they will weaken protections, particularly for respiratory protection".

krcoombs — 2023-11-01 18:50:23 UTC

https://www.forbes.com/sites/judystone/2023/11/01/a-storm-is-gathering-around-a-cdc-committee/?sh=1b5ed64a60b2

"If you feel you are not returning to normal a few weeks to 3 months or more after getting COVID-19, talk to your parents or doctor. Doctors and scientists are working around the clock to figure out what causes long COVID and to protect children and grownups from suffering from this rare but serious condition".

krcoombs — 2023-11-02 12:14:38 UTC

https://kids.frontiersin.org/articles/10.3389/frym.2023.1098238

"State legislatures and politicians are pressuring public health officials to keep quiet about Covid vaccines".

krcoombs — 2023-11-09 02:58:24 UTC

https://www.nbcnews.com/health/health-news/lawmakers-texas-florida-undermine-covid-vaccination-efforts-rcna123866

"Analysis of participants' LC return-to-work experiences using Total Worker Health® and Episodic Disability frameworks illustrate how the fluctuating nature of long COVID requires interpersonal support and concrete accommodations both from employers and coworkers, and how such supports may need to be iteratively modified".

krcoombs — 2023-11-10 03:05:20 UTC

https://www.sciencedirect.com/science/article/abs/pii/S0277953623006937

"The figures, which are likely a significant undercount, represent one of the fastest and most dramatic ruptures in the American safety net since Medicaid went into law in 1965, experts say. Many of the children were qualified for federal assistance but lost it because of bureaucratic mistakes".

krcoombs — 2023-11-10 20:19:16 UTC

https://www.nytimes.com/2023/11/09/health/medicaid-children-lost-coverage.html?smid=nytcore-android-share

"That leaves a big question for HR: If long COVID is here to stay, how will leaders address the effects it will have on the workforce and subsequently the business"?

krcoombs — 2023-11-13 19:17:43 UTC

That leaves a big question for HR: If long COVID is here to stay, how will leaders address the effects it will have on the workforce and subsequently the business?

https://www.hrdive.com/news/long-covid-disability-at-work/699186/

"The close correlation between community respiratory viral incidence and nosocomial infection rates suggests that selectively deploying these measures during periods of heightened community transmission could abort the plurality of nosocomial transmissions".

krcoombs — 2023-11-13 20:39:23 UTC

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2811653

"Research suggests that children with both mild and severe COVID-19 have experienced long-term symptoms. The most common symptoms in children include Tiredness or fatigue, Headache, Trouble sleeping, Trouble concentrating, Muscle/Joint pain, Cough".

krcoombs — 2023-11-13 20:47:14 UTC

https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-in-babies-and-children/art-20484405

"Despite the prevalence of dysautonomia in people with Long COVID, it is currently unknown whether Long COVID dysautonomia is routinely accompanied by structural or functional cardiac alterations".

krcoombs — 2023-11-16 12:18:31 UTC

https://www.mdpi.com/2075-4426/13/11/1606

"One hypothesis posits that COVID-19 may affect what’s known as the hypothalamic-pituitary-ovarian axis. Alternatively, the immune system engaged in fighting the virus could alter the normal inflammatory response of the uterine lining (endometrium) during the cycle".

krcoombs — 2023-11-16 13:56:49 UTC

https://archive.ph/2023.11.15-203922/https://www.nationalgeographic.com/premium/article/covid-19-virus-infection-delay-period-menstruation

"Nearly half of 363,000 US veterans who tested positive for COVID-19 still had symptoms up to 6 months later, and the risk factors for this condition were Black race, older age, diabetes, and severe infection".

krcoombs — 2023-11-17 02:25:03 UTC

https://www.cidrap.umn.edu/covid-19/nearly-half-us-veterans-had-long-covid-symptoms-6-months-later

"Recognizing ethical duties and legal rights is an important first step in developing a framework that accommodates patients with disabilities now that universal masking is no longer the norm in many clinical settings, and in particular, as COVID-19 cases are again on the rise".

krcoombs — 2023-11-18 21:39:52 UTC

https://jamanetwork.com/journals/jama-health-forum/fullarticle/2811897

"That’s why The American Association of Immunologists (AAI) created Immunology Explained—to help you learn more about the immune system and understand research on specific topics so that you can be an advocate for yourself and your family"!

krcoombs — 2023-11-19 12:25:52 UTC

https://immunologyexplained.aai.org/

"But mounting evidence suggests that independent of that syndrome, the coronavirus also befuddles the immune system into targeting the body, causing autoimmune disorders in some people".

krcoombs — 2023-11-23 00:13:48 UTC

How Viral Infections Cause Long-Term Health Problems https://www.nytimes.com/2023/11/22/health/viral-infections-autoimmune-covid.html?smid=nytcore-android-share

"Heart attacks are no longer medical events that should only be considered when you get older. Yes, it's very possible to have a heart attack at a young age, especially with the threat of an infection like COVID-19 that affects heart health".

krcoombs — 2023-11-24 17:27:09 UTC

https://www.livestrong.com/article/13777559-heart-attacks-in-young-adults/

"We don’t have nearly enough attention on post-Covid conditions. And the thing that drives me and keeps me up is because there’s so much fatigue to talk about Covid, we’ve become complacent. That oh, it’s just another one of these diseases that kills people, but we’re OK. And that’s not OK".

krcoombs — 2023-11-27 20:18:30 UTC

https://www.statnews.com/2023/11/24/china-respiratory-illness-immunity-gap-who-maria-van-kerkhove/

"The Biden administration for the first time will allow all schools to order free COVID-19 tests from the federal government ahead of the holidays".

krcoombs — 2023-11-29 15:07:14 UTC

https://www.axios.com/2023/11/29/biden-send-covid-tests-schools-free

In 2023, Cornell was awarded 5 years of funding from the NIH. The award supports three research projects that cover subject interactions, muscle tissue, immune cell dysfunction, cell-free RNA, extracellular vesicle cargo, endothelial function, and multiomics.

krcoombs — 2023-11-30 17:49:09 UTC

https://neuroimmune.cornell.edu/research/

https://mecfs.rti.org/

"Lower federal courts split on Covid as a disability under ADA. But HHS, DOJ advise that long Covid can be a disability".

krcoombs — 2023-12-01 23:15:03 UTC

https://news.bloomberglaw.com/litigation/fired-truck-drivers-long-covid-disability-bias-suit-moves-ahead

ADA: Americans with Disability Act

HHS: Health & Human Services

DOJ: Department of Justice

"Why has the money dried up? Fittingly, one could blame fatigue. There is a bitter feeling within the long COVID community that the rest of the world has grown tired of all things COVID and no longer wants to hear from – or fund studies affecting – those damaged by the virus".

krcoombs — 2023-12-02 12:53:12 UTC

https://www.technologynetworks.com/immunology/articles/long-covid-research-is-a-bit-of-a-mess-381530

"The program initially will provide the LUCIRA® by Pfizer COVID-19 & Flu Home Test, the first U.S. Food and Drug Administration-authorized test that can detect both viruses in a single test at home...providing these services virtually, while individuals remain at home, is intended to expedite the time to treatment".

krcoombs — 2023-12-07 02:25:37 UTC

https://www.nih.gov/news-events/news-releases/home-test-treat-program-extends-nationwide

"We observed substantial brain pathology in SARS-CoV-2–infected dogs, particularly involving blood–brain barrier damage resembling small vessel disease, including changes in tight junction proteins, reduced laminin levels, and decreased pericyte coverage. Furthermore, we detected phosphorylated tau, a marker of neurodegenerative disease".

krcoombs — 2023-12-14 17:52:10 UTC

https://wwwnc.cdc.gov/eid/article/29/11/23-0804_article

"We live in a world where a large percentage of CEOs and shareholders see safety as "a waste".

krcoombs — 2023-12-14 18:17:30 UTC

https://www.okdoomer.io/under-assault-our-right-to-protect-our-health/

" Low vaccination rates, coupled with ongoing increases in national and international respiratory disease activity caused by multiple pathogens, including influenza viruses, SARS-CoV-2 (the virus that causes COVID-19), and RSV, could lead to more severe disease and increased healthcare capacity strain in the coming weeks".

krcoombs — 2023-12-14 22:14:27 UTC

https://emergency.cdc.gov/han/2023/han00503.asp

"We’re facing the prospect of a new pandemic every 10 or 20 years rather than every one hundred not because of bad luck or natural inevitability, but because of systemic features laid down by a ruling class that idolises money, not safety"

krcoombs — 2023-12-15 16:31:48 UTC

https://donotpanic.substack.com/p/the-global-economy-is-a-pandemic?utm_medium=email

"The United States experienced a dramatic 12% increase in homelessness to its highest reported level as soaring rents and a decline in coronavirus pandemic assistance combined to put housing out of reach for more Americans, federal officials said Friday".

krcoombs — 2023-12-16 23:20:42 UTC

https://apnews.com/article/homelessness-increase-rent-hud-covid-60bd88687e1aef1b02d25425798bd3b1

UK: "This information is written by speech and language therapists (SLTs) and is a guide for individuals, and their carers/families, living with the aftereffects of COVID-19 infection".

krcoombs — 2023-12-17 13:49:03 UTC

https://www.rcslt.org/speech-and-language-therapy/clinical-information/long-covid-overview/#section-3

RCSLT= Royal College of Speech & Language Therapists

"We found that despite the fact that the heart was pumping oxygenated blood that the lungs were providing adequate amounts of oxygen for, the extraction of oxygen by the body’s tissues was compromised in patients who had symptoms of exercise intolerance after COVID".

krcoombs — 2023-12-20 03:59:12 UTC

https://news.yale.edu/2023/12/19/study-helps-explain-post-covid-exercise-intolerance

"No matter how difficult it is for you to believe it sometimes, your life matters. Continue disrupting systemic medical racism and discrimination until you convince yourself so strongly that no one can stop you – not even you".

krcoombs — 2023-12-21 13:38:33 UTC

https://thisisnew.com/newsletter/dear-black-woman/

"Instead of warning the public, our leaders have worked on behalf of corporations to shield them from liability. They've manipulated and distorted data to present an illusion of normalcy, while alleviating themselves from the responsibility to care for disabled Covid survivors".

krcoombs — 2023-12-22 22:59:16 UTC

https://www.okdoomer.io/its-that-bad/

COVID-19 Death Data and Resources

krcoombs — 2023-12-24 17:40:12 UTC

https://www.cdc.gov/nchs/nvss/covid-19.htm

UK: "The LCK Educational Toolkit video series and handbook will increase awareness and understanding of Long Covid in children, and provide guidance for teaching and support staff across all age sectors to support CYP with Long Covid".

krcoombs — 2023-12-26 19:16:11 UTC

https://www.longcovidkids.org/educational-toolkit

"Knowing your rights as outlined in the Patients' Bill of Rights is essential for Infection Associated Chronic Conditions patients. Equally important is understanding how to respond when these rights are infringed upon. This guide aims to empower patients and caregivers by outlining steps to take in the face of healthcare rights violations".

krcoombs — 2023-12-26 21:02:09 UTC

https://www.bipocequityagency.com/post/empowering-patients-a-guide-to-chronic-illness-patient-rights-and-path-to-justice

"The work of organizers of color is in response to persistent government inaction and indifference to making concrete investments in building the capacity of communities to address the social drivers of health that are exacerbating the mass disabling event that is Long COVID".

krcoombs — 2023-12-26 21:40:57 UTC

https://disabilityvisibilityproject.com/2023/12/02/still-on-the-margins-long-covid-patients-of-color/

"The findings add to an accumulating body of literature underscoring the harm that occurs when financial investors take over health care providers — not only hospitals, but nursing homes, hospice care, and physician practices".

krcoombs — 2023-12-26 22:49:16 UTC

https://www.statnews.com/2023/12/26/hospitals-private-equity-complications/

“I don’t think most people know just how much she did for this community in a large scale, institutional way,” Jenn Brea wrote. Brea started the hashtag #BethMazur so others could share their memories and grief on social media".

krcoombs — 2023-12-27 14:31:06 UTC

https://thesicktimes.org/2023/12/26/meaction-co-founder-beth-mazur-passes-away/

"ME and LC, as poorly-understood illnesses, provide illustrative case studies of how longstanding bias quietly fills argumentative gaps in scientific and popular discourse".

krcoombs — 2023-12-28 00:56:39 UTC

https://www.tandfonline.com/doi/full/10.1080/00335630.2023.2291895 ME= Myalgic Encephalomyelitis, LC= Long COVID

"How To Talk To Your Loved Ones About Covid: There’s so much misinformation and propaganda about Covid, our understanding of the virus keeps evolving (and is still very incomplete). This is a very, very complicated situation for so many reasons".

krcoombs — 2023-12-30 19:49:45 UTC

https://covid.tips/#about-the-authors

Archive 8/23- 12/22

krcoombs — 2023-12-30 22:02:40 UTC

https://padlet.com/krcoombs/archive-news-media-coverage-vdppi4b6nnonzfs2

"These views are detrimental for affected patients as they can result in misdiagnosis and harmful therapies, such as GET, which can result in lasting worsening of symptoms. Moreover, false psychosomatic attributions lead to stigmatization".

krcoombs — 2023-12-31 15:52:58 UTC

https://www.mdpi.com/1648-9144/60/1/83

"This year, we are not going to give NIH the satisfaction of thinking we are buying into their PR stunts to try to convince us and the world that they are doing everything they can to stop our suffering. We will keep telling them that the Emperor has NO CLOTHES. We know they could do so much more if they tried. And we know we are not a priority for them. We see what they can do when they care about a cause and it is not this".

krcoombs — 2024-01-01 16:39:55 UTC

https://www.whitneydafoe.com/mecfs/?post=nih-shows-their-true-colors-in-the-new-year-2024

"I began to read numerous cogent responses by people with Long COVID and other chronic illnesses and disabilities about why Sanders’ message was inadequate since it ignores the fact that many people do not have the privilege to work from home; how minimal activity can be detrimental to recovery; and how vaccines cannot be the only source of mitigation especially as the Senator is Chair of the Health, Education, Labor, and Pensions committee".

krcoombs — 2024-01-04 01:03:54 UTC

https://disabilityvisibilityproject.com/2024/01/02/disabled-outrage-and-podsavejon/

“We have to spend our limited spoons to do basic public health messaging,” she said, adding that public health agencies could easily do the work to reach way more people than a patient-led billboard campaign ever could".

krcoombs — 2024-01-09 17:49:21 UTC

https://thesicktimes.org/2024/01/09/long-covid-advocates-face-challenges-potential-discrimination-with-billboard-campaigns/

"This didn’t have to be an all-or-nothing choice. By framing Covid precautions as either “lockdown” or “a free-for-all all,” the Biden administration has missed an opportunity to better protect its citizens and send clearer messages around Covid and the risk of long Covid, and promote the kind of commonsense mitigations that create no significant disruptions to “normal” life".

krcoombs — 2024-01-09 23:12:33 UTC

https://newrepublic.com/article/177849/biden-democrats-covid-pandemic-202

"Long-haulers have organized their own advocacy groups and communities to discuss the latest research, treatment options, and recommendations to cope with painful, daily symptoms. But the need for comprehensive, consistent, and trustworthy information about long Covid can be difficult to track down".

krcoombs — 2024-01-09 23:27:09 UTC

https://niemanreports.org/articles/an-antidote-to-the-minimization-of-the-long-covid-crisis/

"The primary aim of that Ramsay Grant was “to unravel the origins of muscle pain, extreme muscle fatigue and post-exertional malaise in patients with long-covid”. I would say the researchers made a good step in that direction".

krcoombs — 2024-01-10 19:22:34 UTC

https://www.healthrising.org/blog/2024/01/09/exercisse-muscle-damage-energy-depletion-long-covid/

"Of the 70 conditions analyzed, disabling Long COVID ranked in the highest 25% of Years Living with Disability (YLDs) at 320/100,000, just above Alzheimer’s (279.4) and below asthma (355.7)".

krcoombs — 2024-01-11 02:41:42 UTC

https://www.medrxiv.org/content/10.1101/2024.01.09.24301057v1

"Despite the significant flaws in the CDC’s data, last week’s updated count is still significant as an acknowledgment that Long Covid can lead to death".

krcoombs — 2024-01-11 18:57:55 UTC

https://thesicktimes.org/2024/01/09/new-cdc-data-identifies-more-than-5000-long-covid-deaths-but-tally-is-likely-a-significant-undercount/

"This is not the first time that mitochondrial dysfunction has been implicated in an illness featuring PEM. In fact, this was first proposed as the underlying mechanism in ME more than 40 years ago".

krcoombs — 2024-01-11 22:51:12 UTC

https://theconversation.com/long-covid-damaged-mitochondria-in-muscles-might-be-linked-to-some-of-the-symptoms-220821

"Overall, “the presence of SARS-CoV-2 itself may trigger a misdirected host immune response to traumatized connective tissue in such patients with preexisting joint hypermobility and may yet represent another possible mechanism for new-onset or worsening connective tissue symptoms within the post-acute infection period".

krcoombs — 2024-01-12 23:51:51 UTC

https://ehlersdanlosnews.com/news/long-covid-symptoms-heds-diagnosis-small-study/

"Might affect one-third of highly symptomatic patients with COVID-19. The effects of CVAD can be seen at both the whole-body level, with impairment of heart rate and blood pressure control, and in specific body regions, typically manifesting as microvascular dysfunction.

krcoombs — 2024-01-14 19:51:49 UTC

https://www.nature.com/articles/s41569-023-00962-3

CVAD=Cardiovascular Autonomic Dysfunction

"While the website is useful for anyone applying for disability, her focus on the unique issues faced by people with myalgic encephalomyelitis and similar marginalized diseases that leave people homebound and bedbound is a rare gift".

krcoombs — 2024-01-15 15:23:33 UTC

https://colleensteckelmeiccinfo.substack.com/p/how-to-have-a-great-disabled-life

"In a turnaround from 2020’s strict stay-at-home protocols, students can now go to class even if they test positive for the virus".

krcoombs — 2024-01-16 13:29:26 UTC

https://www.kron4.com/news/bay-area/oakland-schools-allow-covid-positive-students-to-attend-class/

"Dr. Michael Osterholm, director of the Center for Infectious Disease Research and Policy, railed about the lack of understanding and misinformation coming from even leading medical centers, like Mass General Brigham".

krcoombs — 2024-01-17 20:23:32 UTC

https://www.forbes.com/sites/judystone/2024/01/17/hospitals-need-to-resume-universal-masking-heres-what-they-are-doing-now/?sh=796924b52d5b

"There is also a lack of funding and political commitment to researching long COVID, developing treatments for it, and learning from the significant population in the disability community who have post-viral illnesses".

krcoombs — 2024-01-17 21:21:21 UTC

https://www.teenvogue.com/story/covid-isnt-going-anywhere-masking-up-could-save-my-life"

"The hope is physicians will examine how the menstrual cycle, pregnancy, and menopause affect symptoms and illness progression of long COVID".

krcoombs — 2024-01-20 03:49:17 UTC

https://www.medscape.com/viewarticle/why-are-women-more-likely-get-long-covid-2024a10001im

"Seeing COVID rates hit another high, and vaccine uptake remain low, doctors don’t have an antidote for something they see as an ongoing risk factor: the spread of misinformation, including on the presidential campaign trail".

krcoombs — 2024-01-20 13:08:07 UTC

https://www.pbs.org/newshour/health/as-covid-cases-rise-doctors-worry-about-the-consequences-of-misinformation

"In this study, victim-survivors commonly described losing control of their health and then losing control of their safety within their relationship".

krcoombs — 2024-01-23 12:51:23 UTC

https://theconversation.com/how-both-health-and-safety-are-compromised-for-people-living-with-long-covid-and-intimate-partner-violence-221413

"Nurses face worsening working conditions amid winter surge in Covid and other respiratory viruses, as CDC looks to weaken infection control guidance".

krcoombs — 2024-01-24 03:27:53 UTC

https://www.nationalnursesunited.org/ninth-covid-survey-nurses-face-worsening-working-conditions

"Covid, Year Four: Liberals are in denial. Conservatives are trying to destroy public health. And the virus is still raging".

krcoombs — 2024-01-25 02:00:00 UTC

https://www.thenation.com/article/society/four-years-of-covid-gonsalves/

"Attempting to protect yourself from airborne viruses in a world with zero airborne infection control is as effective as trying to avoid cholera in a world without clean public water. Worth doing? Yes. Carries great financial and social cost and still won’t fully protect you? Also yes".

krcoombs — 2024-01-25 03:30:26 UTC

https://www.thegauntlet.news/p/institutional-covid-denial-has-killed

"An Associated Press investigation found that at least 15 states, from Alaska to Vermont, have tossed some of their trove of PPE because of expiration, surpluses, and a lack of willing takers. Into the trash went more than 18 million masks, 22 million gowns, 500,000 gloves, and more. (N=~15 states reporting)

krcoombs — 2024-01-25 19:17:04 UTC

https://www.pbs.org/newshour/health/states-trash-masks-and-pandemic-gear-as-huge-stockpiles-linger-and-expire

"People with post-viral illnesses often feel shut out of the scientific establishment. Two renowned Yale researchers are attempting to bring them in".

krcoombs — 2024-01-25 23:21:13 UTC

https://www.newyorker.com/news/annals-of-inquiry/what-would-it-mean-for-scientists-to-listen-to-patients

" This escalating danger, particularly for those who have suffered repeated infections, poses a severe threat to public health that demands our immediate and focused attention".

krcoombs — 2024-01-26 23:03:26 UTC

https://www.usatoday.com/story/opinion/voices/2024/01/26/long-covid-paxlovid-costs-plaguing-american-healthcare/72337750007/

"The Biden administration says the facilities need to do more. Home executives say vaccine hesitancy requires a new government message".

krcoombs — 2024-01-27 03:21:52 UTC

https://www.politico.com/news/2024/01/26/nursing-homes-residents-covid-shot-00137665

"House Republicans want to slash billions from health research, disarming us in the fight against everything from childhood cancer to autoimmune diseases to long COVID".

krcoombs — 2024-01-29 02:33:10 UTC

https://www.nj.com/opinion/2024/01/from-cancer-to-long-covid-the-caveman-caucus-axes-health-research-editorial.html

"Higher loss of work days may be driven by the overrepresentation of minoritized populations in physically demanding frontline industries without the option to work from home. Increased focus on understanding drivers of ethnic and racial differences in health impacts may inform approaches to advance health equity after SARS-CoV-2 infection."

krcoombs — 2024-01-31 20:52:59 UTC

https://www.cidrap.umn.edu/covid-19/racial-minorities-have-greater-long-term-harms-covid-19-data-show

CBS News segment promoting ongoing study in Children for Tier 2 NIH RECOVER Study.

krcoombs — 2024-01-31 23:20:32 UTC

https://www.cbs8.com/video/news/health/509-56c8aa05-5362-40d4-9f26-3bf4646642da

"The U.S. Department of Labor is committed to ensuring equitable access to health and safety for America's workers and providing resources to respond to and recover from the Coronavirus pandemic".

krcoombs — 2024-02-03 14:04:27 UTC

https://www.dol.gov/agencies/odep/topics/coronavirus-covid-19-long-covid

"What does brain fog look and feel like? How do I manage mental fatigue"?

krcoombs — 2024-02-03 16:03:22 UTC

https://www.med.unc.edu/phyrehab/wp-content/uploads/sites/549/2023/01/COVID-Resources-Brain-Fog.pdf

“Far more Maryland students are missing too much school,” an important topic isn’t addressed: absences due to illness. Focusing on attendance might be harming children who need to rest and recover from seasonal and other infections".

krcoombs — 2024-02-05 03:53:40 UTC

https://www.thebaltimorebanner.com/opinion/letters/schools-absenteeism-children-covid-19-OU26KN7LQNCNPPNATPZCURE5PA/

"The US experience of the covid-19 pandemic has revealed that the mere existence of acute social need is not sufficient to bring about fundamental political change".

krcoombs — 2024-02-06 02:38:12 UTC

https://www.bmj.com/content/384/bmj-2023-076969

"While only 2.9% of the population, Immune Compromised individuals had a higher risk of COVID-19 hospitalization and incurred higher healthcare costs across variants".

krcoombs — 2024-02-06 02:52:06 UTC

https://link.springer.com/article/10.1007/s12325-023-02754-0

"Albany Med has been awarded a five-year, $3.9 million grant from the National Institutes of Health to study biomarkers in the blood of patients who have had COVID-19 but continue to experience symptoms for weeks or months after the initial infection".

krcoombs — 2024-02-08 13:49:57 UTC

https://altamontenterprise.com/01312024/albany-med-seeking-signature-long-covid-gets-39m-grant

"Many seniors at high risk aren’t getting antiviral therapies for Covid, and most older adults in nursing homes aren’t getting updated vaccines. Efforts to strengthen care quality in nursing homes and assisted living centers have stalled amid debate over costs and the availability of staff.".

krcoombs — 2024-02-09 03:28:07 UTC

https://www.cnn.com/2024/02/08/health/aging-discrimation-kff-partner-wellness

"Clinicians should ask about persistent symptoms and not solely attribute new symptoms to patients' pre-existing disability. New symptoms may be driven by long COVID instead and may be exacerbated in the setting of the patients' pre-existing disability."

krcoombs — 2024-02-09 15:40:40 UTC

Neurologic Disabilities Linked to Long COVID Risks | MedPage Today

"A study of US veterans finds that healthcare visits rose significantly in the month after COVID-19 infection and then leveled off but remained higher than those of their uninfected peers through 1 year". N=202,803

krcoombs — 2024-02-09 19:09:44 UTC

https://www.cidrap.umn.edu/covid-19/report-spotlights-us-veterans-higher-healthcare-use-year-after-covid-19-infection

"We demonstrated that Common Variable Immune Deficiency (CVID) patients present an increased prevalence of LC when compared to the general population".

krcoombs — 2024-02-10 04:51:17 UTC

https://link.springer.com/article/10.1007/s10875-024-01656-2

"We observed peaks in non-COVID-19 excess deaths in the same or prior month as COVID-19 deaths, a pattern consistent with these being unrecognized COVID-19 deaths that were missed due to low community awareness and a lack of COVID-19 testing".

krcoombs — 2024-02-11 14:59:02 UTC

https://www.cidrap.umn.edu/covid-19/covid-19-behind-thousands-excess-us-deaths-analysis-shows

"The presence of long Covid in children is a significant public health problem that must be addressed. The extent of the problem, however, remains unknown".

krcoombs — 2024-02-11 18:08:53 UTC

https://www.forbes.com/sites/davewessner/2024/02/10/researchers-estimate-long-covid-may-affect-58-million-children-are-they-right/?sh=fa9224f11c1e

"Two new studies – one looking at pregnant people and the other on children – give a better look at the burden from this health problem that doctors say often goes under the radar".

krcoombs — 2024-02-13 02:33:19 UTC

Millions of people have long Covid, including children and pregnant people, studies show https://www.cnn.com/2024/02/12/health/long-covid-pregnancy-children

"Long COVID affects what a child is able to do during a day, like how they play or if they are able to go to school. Long COVID can happen to any child, even if they had mild or no symptoms during their COVID infection".

krcoombs — 2024-02-13 17:44:02 UTC

B-1113-PediatricLongCOVIDTipSheet-NonSiteSpecific.v2-20230913.pdf - Google Drive

"About 1 of 5 COVID-19 cases in the U.S. occurred in children and young adults, and nearly 6 million young people in the U.S. are affected by long COVID".

krcoombs — 2024-02-13 18:27:07 UTC

https://www.chla.org/research/blog/news-and-innovation/chla-researchers-and-their-collaborators-recover-initiative

"To bolster Long COVID research efforts, NIH is investing an additional $515 million over the next four years into the Researching COVID to Enhance Recovery (RECOVER) Initiative".

krcoombs — 2024-02-13 18:35:12 UTC

https://recovercovid.org/updates/nih-to-bolster-RECOVER-Long-COVID-research-efforts

"Our data indicate that COVID-19 is associated with a significant increase in new fatigue diagnoses, and physicians should be aware that fatigue might occur or be newly recognized >1 year after acute COVID-19".

krcoombs — 2024-02-15 02:15:37 UTC

https://wwwnc.cdc.gov/eid/article/30/3/23-1194_article

"The annual costs of “endemic COVID” could range between $137 to $379 billion with estimates of 110 to 220 million COVID infections and 20 million Long COVID cases annually".

krcoombs — 2024-02-15 02:22:56 UTC

https://www.wsws.org/en/articles/2024/02/13/nzsh-f13.html

"Our findings show that many COVID-19 deaths went uncounted during the pandemic.”

krcoombs — 2024-02-16 12:48:45 UTC

https://penntoday.upenn.edu/news/researchers-find-many-natural-and-covid-19-deaths-likely-related

"The patient-led care revolution. Why moving away from the old model of health care will make it better". Q & A with the Author

krcoombs — 2024-02-17 17:19:25 UTC

https://harvardpublichealth.org/reviews/fiona-lowenstein-interviews-rebel-health-author-susannah-fox/

"It involves finding a comfortable range of energy expenditure that avoids both over‑exertion and under-exertion, maintaining an optimal level of activity over time".

krcoombs — 2024-02-19 12:56:06 UTC

https://www.makevisible.com/pacing

"Despite the problems of mass incarceration, it is not monitored like other public health crises in the US. For instance, there is no real time or comprehensive health data reporting from the country’s 53 disaggregated prison systems".

krcoombs — 2024-02-20 13:48:35 UTC

https://www.bmj.com/content/384/bmj-2023-076975

"Cure ID: U.S. government initiative launched a pair of surveys to collect information about how people with Long Covid are managing their symptoms".

krcoombs — 2024-02-20 18:34:31 UTC

https://thesicktimes.org/2024/02/20/long-covid-surveys-from-an-fda-nih-initiative-ask-which-drugs-help-alleviate-symptoms/

"It’s believed that immunomodulators like baricitinib may be the most effective treatment for the lingering effects of LC".

krcoombs — 2024-02-23 03:03:56 UTC

https://news.vumc.org/2024/02/22/nih-funded-trial-to-determine-if-immunomodulation-can-improve-brain-and-cardiovascular-dysfunction-in-long-covid/

"UCSF launches novel approach to help unravel mysteries of long COVID. Research center opens the world’s first tissue bank of specimens collected from people beset by the persistent illness".

krcoombs — 2024-02-23 03:29:03 UTC

https://www.sfchronicle.com/health/article/ucsf-long-covid-tissue-18678714.php

"Development of a comprehensive education program on Long COVID and related virus-driven chronic illness. Educational materials will be offered online free of charge, and made available worldwide to physicians and medical professionals including physical therapists and nurses, as well as patients and the general public".

krcoombs — 2024-02-23 15:08:42 UTC

https://polybio.org/projects/open-longcovid-medical-education-program/

"Despite a “tight” labor market last year, with more jobs than workers, disabled people were about twice as likely to be unemployed as nondisabled people, similar to 2022".

krcoombs — 2024-02-23 21:15:32 UTC

https://nationalpartnership.org/disabled-employment-record-high-but-disparities-remain/

"We expect public health to deliver, yet we’ve starved our institutions, either out of antipathy to their project to ensure the health and well-being of Americans, or, more mundanely, because our leaders simply don’t care—public health is at the bottom of their list of political priorities".

krcoombs — 2024-02-24 12:10:05 UTC

https://www.thenation.com/article/society/undermining-public-health/

"Help raise awareness about Long COVID through our many actions below and get a Long COVID Awareness Day T-Shirt and profile picture"!

krcoombs — 2024-02-24 17:06:25 UTC

https://www.longhauler-advocacy.org/longcovidad24

"Long COVID symptoms hinder the development of socio-emotional and occupational roles. Healthcare professionals should consider this when intervening to ensure that their patients may recover their life as it was before the disease"

krcoombs — 2024-02-24 22:15:30 UTC

https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0296041&fbclid=IwAR1Axl-t4UI-nw_aZW6gAeTvFnRR4wLKZIo3J5HwpEdqDlupl4Zr_edIAqM#pone-0296041-t001

"We’re pleased to announce that the first summary report, following our series of workshops on the needs and priorities of the infection-associated chronic conditions patient community".

krcoombs — 2024-02-26 22:30:07 UTC

https://solvecfs.org/icue-project-publishes-first-paper/

https://solvecfs.org/wp-content/uploads/2024/02/ICUEPublicReport.pdf

"Penn’s research on viral persistence and related immune system biomarkers in long COVID patients has the power to direct investments in treatment and clinical trials".

krcoombs — 2024-02-28 14:28:18 UTC

https://www.pennmedicine.org/news/news-releases/2024/february/new-grant-to-fund-long-covid-research

"Some people who have been infected with the virus that causes COVID-19 can experience long-term effects from their infection, known as Long COVID".

krcoombs — 2024-03-01 03:31:36 UTC

https://www.omf.ngo/what-is-long-covid/

“We have not seen a single initiative, commitment or engagement from the federal government that addresses the needs of trans people in this health crisis, even though their own statistics reveal a huge impact of Long Covid on trans people”.

krcoombs — 2024-03-01 04:14:04 UTC

https://clearhealthcosts.com/blog/2024/02/long-covid-challenges-trans-bisexual-lgbtq-patients/

"While this presentation was created specifically for therapists, much of this information is relevant to other health care providers, or anyone interested in learning more about COVID"!

krcoombs — 2024-03-01 04:30:50 UTC

https://covid-for-therapists.my.canva.site/

"Betsy Ladyzhets spoke to Dr. Simon about his prior experience, his work at the Long Covid office so far, and his plans for leveraging federal resources to advance research and support for people with Long Covid".

krcoombs — 2024-03-01 18:09:25 UTC

https://thesicktimes.org/2024/02/27/qa-dr-ian-simon-on-his-plans-for-the-hhs-office-of-long-covid-research-and-practice/ Office of Long COVID Research and Practice (OLCRP)

The $515 million in additional funding: Testing additional interventions, Investigating who fully recovers over the long term, and how the virus affects risk for other diseases, Maintain support and storage of clinical data and biospecimens.

krcoombs — 2024-03-01 20:01:50 UTC

https://recovercovid.org/updates/nih-to-bolster-RECOVER-Long-COVID-research-efforts

" In this way, the new guidance continues the disturbing trend we have continually witnessed in response to COVID-19, of enacting policies that leave disabled people behind and isolate them further".

krcoombs — 2024-03-02 13:04:04 UTC

https://www.aapd.com/aapd-responds-cdc-respiratory-virus-guidance/

"While there are undoubtedly some people who have long COVID and didn't have these persistent symptoms before becoming infected with COVID-19, it is still very difficult to dissect out what is a multiple sclerosis long-term symptom and what is a COVID-19 long-term symptom."

krcoombs — 2024-03-03 02:00:46 UTC

https://www.medpagetoday.com/meetingcoverage/actrims/108993

"We found that female and male participants with LC experienced different sets of symptoms, and distinct patterns of organ system involvement, with female participants suffering from a higher symptom burden".

krcoombs — 2024-03-03 18:59:43 UTC

https://www.medrxiv.org/content/10.1101/2024.02.29.24303568v1

Links to Solve M.E.’s Advocacy Week, NIH ME/CFS Roadmap Webinar, International Portuguese ME/CFS and Long-COVID Conference, Online Webinars/Seminars/Podcasts

krcoombs — 2024-03-03 21:14:22 UTC

https://www.healthrising.org/blog/2024/03/03/roadmaps-conferences-advocacy-week-webinars-seminars-oh-my-pjh/

"It’s alarming that our national public health protection agency (CDC) is relaxing isolation guidance when emerging data shows a significant community impact on children".

krcoombs — 2024-03-04 21:27:24 UTC

https://longcovidfamilies.org/advocacy/news-media/press-release/

American Public Health Association updated COVID-19 materials (3/2024)

krcoombs — 2024-03-09 18:26:28 UTC

https://www.apha.org/Topics-and-Issues/Communicable-Disease/Coronavirus

"As we strive towards a more equitable and inclusive research landscape, we should be shepherded by Aurora Levins Morales’ second principle of disability justice: “We are led by those who most know these systems.”

krcoombs — 2024-03-12 03:03:10 UTC

https://www.statnews.com/2024/03/11/disabled-researchers-science-nih-dei-policy-disability-inclusion/

"It is not “fatigue”. It is not “headaches.” It is a serious, common outcome of COVID-19 infection that has left millions of people in the US alone permanently unable to work".

krcoombs — 2024-03-12 22:13:40 UTC

https://www.thegauntlet.news/p/disabled-peoples-exclusion-from-indoor

Long Covid Insights: Dashboard containing Trials, Conferences & Updates, Research, Research Groups, Unpublished Preprints, COVID-19 Treatment Guidelines

krcoombs — 2024-03-13 01:29:10 UTC

https://www.longcovidinsights.com/

"Since the first booster, no follow-ups have been provided. COVID is still here. We may have just “survived” another wave, but the prison system and the people who live here cannot recover".

krcoombs — 2024-03-15 03:02:58 UTC

https://prismreports.org/2024/03/12/covid-19-far-from-over-incarcerated/

SENATE RESOLUTION 590--DESIGNATING MARCH 15, 2024, AS "LONG COVID AWARENESS DAY" (SANDERS, Kaine, Markey, Hickenlooper, Smith, Casey, and Baldwin)

krcoombs — 2024-03-15 14:56:08 UTC

https://www.congress.gov/congressional-record/volume-170/issue-46/senate-section/article/S2416-1?q=%7B%22search%22%3A%22Long+Covid+awareness%22%7D&s=1&r=1

"We have arrived here from different places, and while we must acknowledge those differences, we also must remember that we have one common goal: END ME/CFS and Long Covid".

krcoombs — 2024-03-15 16:55:02 UTC

https://www.whitneydafoe.com/mecfs/?post=honoring-long-covid-patients

"This U.S. government logic model underpins our federal organizational structure, working with internal and external partners and stakeholders. Health equity is embedded in all the activities, even where not explicitly stated." Page 51, CDC updated doc 2/24

krcoombs — 2024-03-15 18:03:30 UTC

https://www.hhs.gov/sites/default/files/long-covid-update-2024.pdf

his U.S. government logic model underpins our federal organizational structure, working with internal and external partners and stakeholders. Health equity is embedded in all the activities, even where not explicitly stated." Page 51, CDC updated doc 2/24

"In honor of International Long COVID Awareness Day on March 15, this special issue of the ODEP News Brief shares resources to help employers understand Long COVID and support affected workers so they can stay on the job or return to work when ready". Office of Disability Employment Policy

krcoombs — 2024-03-15 21:45:27 UTC

https://www.dol.gov/agencies/odep/publications/news-brief/20240314

"It is therefore important to similarly recognize that while Long COVID symptoms are associated with organ damage, many individuals have organ damage without displaying recognized symptoms and to include this harm in the characterization of COVID-19 and the monitoring of individuals after COVID-19 infections".

krcoombs — 2024-03-16 20:10:06 UTC

https://whn.global/scientific/spectrum-of-covid-19-from-asymptomatic-organ-damage-to-long-covid-syndrome/

"It can be used as a tool to help people living with Long Covid talk about their symptoms so they can get care and support".

krcoombs — 2024-03-17 11:48:08 UTC

https://long-covid-care.org.uk/

https://www.medrxiv.org/content/10.1101/2024.01.03.24300767v1.full

"Today we release a new report - PDF that lays out our goals and objectives for this work and how we think about it. We see this work falling into five domains: research, clinical practice, supports and services, public education, and coordination".

krcoombs — 2024-03-17 21:07:49 UTC

https://www.hhs.gov/blog/2024/03/15/reflections-deputy-director-hhs-office-long-covid-research-and-practice.html

https://www.hhs.gov/sites/default/files/long-covid-update-2024.pdf

“Considering the history of research in reproductive health for women and nonbinary people," or, more accurately, the lack thereof, "I think we have to fight for recognition that we have an issue that is urgent and worth investigating”.

krcoombs — 2024-03-17 21:49:46 UTC

https://www.wellandgood.com/covid-and-menstrual-cycle/+

"Rep. Pressley has been a longtime champion for people suffering from Long COVID and for disaggregated demographic data on COVID-19 to better address the pandemic’s disproportionate impact on communities of color".

krcoombs — 2024-03-18 17:20:59 UTC

https://www.statehousenews.com/pr/on-long-covid-awareness-day-pressley-keeps-up-fight-for-covid-long-haulers/article_ac06307d-5a70-528b-9f3d-b45e3c6f7b62.html

https://pressley.house.gov/2024/03/15/on-long-covid-awareness-day-pressley-keeps-up-fight-for-covid-long-haulers/

"The mobile health unit opened in December through a partnership between People.Health, Moderna, Team Wellness Center and other community organizations to offer individuals no-cost CT screenings looking for lung damage from risk factors including Long COVID".

krcoombs — 2024-03-18 17:22:01 UTC

https://michiganadvance.com/2024/03/15/detroit-lawmakers-mark-long-covid-awareness-day-by-visiting-mobile-unit-screening-for-lung-damage/

"Healthcare professionals have observed oral manifestations in individuals diagnosed with long COVID; however, further information and training on this topic would assist them with managing patients and increasing awareness among clinicians".

krcoombs — 2024-03-20 00:29:30 UTC

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10817823/

"People with excessive flexibility 30% more likely to say they had not fully recovered from Covid, research finds".

krcoombs — 2024-03-20 00:31:35 UTC

https://www.theguardian.com/society/2024/mar/19/people-with-hypermobility-may-be-more-prone-to-long-covid-study-suggests

"In academia’s rigid research-assessment system, which is based on the quantity of publications and invited talks a person clocks up, people with chronic illnesses find it incredibly hard to compete".

krcoombs — 2024-03-20 00:44:30 UTC

https://www.nature.com/articles/d41586-024-00819-w

"While there are no approved treatments for Long COVID, that doesn’t mean there isn’t anything we can do to protect ourselves".

krcoombs — 2024-03-20 15:37:06 UTC

Long COVID Awareness Day: Amplifying the Patient Voice (modernatx.com )

"RECOVER’s weaknesses included putting so many of its resources into the observational study, not prioritizing what patients want to see in the clinical trials, and few, if any, resources devoted to hypothesis testing (other than the $40 million outlay in the beginning)".

krcoombs — 2024-03-21 19:33:15 UTC

https://www.healthrising.org/blog/2024/03/20/recover-long-covid-mccorkell-interview/

"ME patients experience a dramatic loss of health and function that is both severe and persistent. NIH has never taken ME seriously by investing in research that would look in earnest for the cause of this loss".

krcoombs — 2024-03-22 12:49:01 UTC

https://thoughtsaboutme.com/2024/03/20/3057/https://thoughtsaboutme.com/2024/03/20/3057/

"Our findings suggest the need to support a robust federal, state, and local public health communications infrastructure; ensure agencies’ authority to make science-based recommendations; and develop strategies for engaging different segments of the public". N=4,208

krcoombs — 2024-03-23 21:25:41 UTC

https://www.healthaffairs.org/doi/10.1377/hlthaff.2022.01204

"Estimates include the percentage of adults ages 18 and older by attitudes and beliefs about Long COVID, differences in these attitudes and beliefs by experience with Long COVID, and where they would go first to learn more about Long COVID".

krcoombs — 2024-03-23 23:07:12 UTC

https://www.cdc.gov/nchs/rss/round1/long-covid.html

Updated 3/24: Patient Tips: Healthcare Provider Appointments for Long COVID

krcoombs — 2024-03-23 23:08:02 UTC

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/post-covid-appointment/index.html

"Despite the continued lack of interest by the biomedical research community, the syndrome known as ME has been described for decades, originating from a series of outbreaks of unexplained illnesses across the world in the early 1900s".

krcoombs — 2024-03-25 01:55:48 UTC

https://lcbreakdown.substack.com/p/how-federal-research-continues-failing?utm_medium=ios

"In preparation for this final version of the Guidelines, the Panel reviewed all the sections that were not updated on December 20, 2023. The information in these sections is current as of February 2024".

krcoombs — 2024-03-25 02:15:12 UTC

https://www.covid19treatmentguidelines.nih.gov/about-the-guidelines/whats-new/

https://www.covid19treatmentguidelines.nih.gov/

HHS: "The Long COVID Healthathon officially kicks off with a live event on April 10, time to be announced, but you can get started now with the following steps":

krcoombs — 2024-03-26 16:12:03 UTC

https://longcovid.crowdicity.com/

"A new study has found that teaching is the most vulnerable profession when it comes to who will experience long-term symptoms of Covid-19".

krcoombs — 2024-03-26 23:56:34 UTC

https://www.rnz.co.nz/news/national/512783/long-covid-extremely-debilitating-for-teachers-union-says

"You Have To Live Your Life: A resource for COVID-19 research and information".

krcoombs — 2024-03-28 23:30:05 UTC

https://youhavetoliveyour.life/

"NIH ME/CFS deep phenotyping study – summaries and infographics". N=17

krcoombs — 2024-03-29 19:09:03 UTC

https://www.meresearch.org.uk/nih-me-cfs-deep-phenotyping-study-infographics/

Asian & Pacific Islander American Health Forum: Long COVID and mental health infographics/brochure

krcoombs — 2024-03-29 19:25:42 UTC

https://www.apiahf.org/resource/long-covid-and-mental-health-brochure/

Health Justice Non-profit Org

"We conducted two studies to examine the burden of the COVID-19 pandemic on California farmworkers". N=1091 (2020), N=297 (2022)

krcoombs — 2024-03-30 12:09:09 UTC

https://cerch.berkeley.edu/research-programs/farmworker-covid-and-long-covid-studies

"This is about half of the predicted production losses from illnesses like diabetes or cancer, funded much more than long-term COVID-19".

krcoombs — 2024-03-31 13:07:19 UTC

https://www.techexplorist.com/long-covid-sufferers-ignored/82594/

"One of the big things we have seen [this year] is a really intense banging on the drum of attendance, People are being encouraged to send their kids to school sick — it is such a shortsighted suggestion.”

krcoombs — 2024-04-01 02:18:05 UTC

https://www.thecut.com/article/school-attendance-policies-nyc-california-illness-sick.html

"Advocates say more support staff, more work flexibility, and higher compensation would significantly ease the burden that drives burnout and depression".

krcoombs — 2024-04-08 03:04:53 UTC

https://www.medscape.com/viewarticle/some-mds-long-covid-burnout-new-reality-2024a10006hq?ecd=WNL_trdalrt_pos1_240407_etid6428256&uac=123390EZ&impID=6428256

"The paper utilized robust public health datasets and provides additional insights into how certain demographic risk factors and severity of COVID infection are associated with long COVID".

krcoombs — 2024-04-08 16:20:07 UTC

https://www.ctpublic.org/news/2024-04-03/certain-us-populations-are-more-likely-to-get-long-covid-yale-researchers-are-examining-why

"Research published today in Lancet Infectious Disease and supported by PolyBio Research Foundation provides the strongest evidence yet that the COVID virus can persist for months or years after infection".

krcoombs — 2024-04-09 01:35:38 UTC

https://polybio.org/covid-19-virus-can-persist-in-the-body-more-than-a-year-after-infection/

Guides, Hospital checklists, Screeners, Diagnosis and Management, Priorities

krcoombs — 2024-04-09 14:09:13 UTC

Handouts & Tools - #MEAction Network

"The groups with the highest rates of long COVID—adults who are transgender and those with disabilities—also have greater challenges accessing health care even without long COVID and experience higher rates of discrimination by providers".

krcoombs — 2024-04-11 13:00:04 UTC

https://www.kff.org/coronavirus-covid-19/issue-brief/as-recommendations-for-isolation-end-how-common-is-long-covid/

"This guidance statement reviews the pathophysiology of severe acute COVID-19 and long COVID and provides pragmatic approaches to long COVID symptoms, syndromes, and conditions in the occupational setting. Disability laws and workers’ compensation are also addressed".

krcoombs — 2024-04-11 13:33:44 UTC

https://journals.lww.com/joem/fulltext/2024/04000/long_covid_acoem_guidance_statement.13.aspx

Journal of Occupational and Environmental Medicine is an indispensable guide to good health in the workplace for physicians, nurses, and researchers alike.

Study to gain a better understanding of the disability experiences among people living with Long COVID and assess the presence, severity and episodic nature of disability among people living with Long COVID.

krcoombs — 2024-04-11 14:04:36 UTC

"To try to understand the post-COVID-19 condition, researchers have developed a number of animal models".

krcoombs — 2024-04-13 01:36:40 UTC

https://www.understandinganimalresearch.org.uk/news/long-covid-can-animals-provide-the-answers

“It really deepened my connection to the natural world, and I wanted to share that with this community of people who have become so important to me,” Yong says. “It really felt like that could work.”

krcoombs — 2024-04-13 22:25:05 UTC

https://www.audubon.org/magazine/new-birding-club-wants-help-covid-long-haulers-safely-enjoy-nature-together

"The home “Test to Treat” program is closing April 16, leaving disabled and vulnerable Covid-19 patients without good options for accessing timely diagnosis and care".

krcoombs — 2024-04-13 22:53:15 UTC

https://www.forbes.com/sites/judystone/2024/04/08/important-program-for-covid-patients-closes-leaving-many-stranded/?sh=488dc66c42b6

"It is shocking to me that the article never suggests that some absenteeism might be due to chronic illness from Covid".

krcoombs — 2024-04-14 00:08:01 UTC

https://www.nytimes.com/2024/04/13/opinion/student-absenteeism.html

Take this simple questionnaire to find out if you meet current criteria for being at high risk for progression to severe COVID-19, and whether you are eligible for oral antiviral treatment.

krcoombs — 2024-04-14 02:10:12 UTC

https://ada.com/covid/antiviral-treatment-criteria-questionnaire/

Launched in 2024. Ada started in Germany in 2023: https://ada.com/press/231004-ada-germany-covid-19-risk-and-therapy-screener/

"Nevertheless, the public, people, even parents of patients suffering from these problems, and researchers, clinicians, academics, around the world, are still debating if these problems are real and caused by the virus, or are a consequence of other social interventions (including lockdowns, economic consequences, etc)".

krcoombs — 2024-04-14 14:28:20 UTC

https://danilobuonsenso.substack.com/p/sars-cov-2-can-invade-the-central

"Different symptoms, same story: the medical establishment ignoring Black women's suffering from long COVID".

krcoombs — 2024-04-17 18:43:26 UTC

https://wordinblack.com/2024/04/how-medical-gaslighting-ignores-black-women-with-long-covid/

"These potential mechanisms include compromised immune system function, damage to blood vessels, and direct harm to the brain and nervous system".

krcoombs — 2024-04-17 18:48:55 UTC

https://www.yalemedicine.org/news/what-is-long-covid

"The pandemic showed that remote learning is effective. It’s absurd that universities are going back to processes that exclude us".

krcoombs — 2024-04-17 22:29:39 UTC

https://www.theguardian.com/commentisfree/2024/apr/17/higher-education-accessibility-disabled-people-covid-pandemic-remote-learning-universities

"The research will leverage HiFiBiO’s Drug Intelligence Science (DIS®) platform for single cell profiling to analyze samples from patients afflicted with neuroinflammatory and infection-associated chronic illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID".

krcoombs — 2024-04-18 01:39:37 UTC

https://hifibio.com/hifibio-therapeutics-receives-grant-to-research-long-covid-and-me-cfs-in-collaboration-with-umass-chan-medical-school/

This is a virtual connection-making program, open to all kids & teens age 4-17. Participants can live anywhere!

krcoombs — 2024-04-22 01:13:10 UTC

https://allbrainsbelong.org/kid-connections/

There are currently eleven studies on long-term COVID-19 outcomes to help us diagnose, treat, and support Veterans with PASC.

krcoombs — 2024-04-26 01:35:47 UTC

https://www.research.va.gov/corc/long-covid.cfm

PASC= Post Acute Sequelae of COVID-19

On this web page, we summarize recent and current COVID-19 research across the Veterans Affairs (VA) system.

krcoombs — 2024-04-26 01:54:02 UTC

https://www.research.va.gov/topics/covid-19.cfm

Each type of study uses a standardized research protocol (or study plan) so that RECOVER researchers can combine data from different research networks and locations.

krcoombs — 2024-04-26 02:06:31 UTC

https://recovercovidjaqgerrqwb.devcloud.acquia-sites.com/research-components

RECOVER studies include adults, pregnant people, and children and their caregivers who take part in observational cohort studies and clinical trials at study sites across the United States. RECOVER studies also examine real-world data and biospecimens.

krcoombs — 2024-04-26 02:07:36 UTC

https://recovercovidjaqgerrqwb.devcloud.acquia-sites.com/research-works

"While HIV/AIDS seemed to settle this issue, coronavirus disease 2019 (COVID-19) rekindled debates regarding treatment refusal".

krcoombs — 2024-04-26 11:10:52 UTC

https://www.cidrap.umn.edu/covid-19/covid-may-have-eroded-doctors-belief-they-are-obligated-treat-infectious-patients

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciae162/7657069

"Deidentified data from thousands of adults with long COVID are now available to researchers".

krcoombs — 2024-04-26 11:12:35 UTC

https://www.nih.gov/news-events/news-releases/nih-recover-makes-long-covid-data-easier-access

Bezisterim, an anti-inflammatory and insulin-sensitizer that permeates the blood brain barrier, could represent a novel oral treatment targeting an underlying cause of long COVID symptoms

krcoombs — 2024-04-30 02:00:28 UTC

https://www.biospace.com/article/releases/biovie-awarded-up-to-13-1-million-in-funding-from-u-s-department-of-defense-to-evaluate-bezisterim-ne3107-for-the-treatment-of-long-covid/#:~:text=BioVie%20Awarded%20up%20to%20%2413.1,Treatment%20of%20Long%20COVID%20%7C%20BioSpace

“This suggests that the neuroinflammation in Long COVID patients may be connected to vascular problems,” said VanElzakker.

krcoombs — 2024-05-03 20:13:27 UTC

https://polybio.org/longcovid-brain-inflammation-associated-with-vascular-problems-harvard-team-finds/

https://www.sciencedirect.com/science/article/pii/S0889159124003593

"The new rule, "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", is one of the greatest advancements towards health equity for disabled people in American history.

krcoombs — 2024-05-03 20:17:00 UTC

https://www.aapd.com/hhs-discrimination-rule/

"Disclosing a challenging health condition at work can be risky. You may get the accommodations you need, but you may also be met with suspicion, resentment, and accusations of making it all up".

krcoombs — 2024-05-08 02:58:29 UTC

https://hbr.org/2024/05/how-to-weigh-the-risks-of-disclosing-a-disability

"The new trials will enroll approximately 1,660 people across 50 study sites to investigate potential treatments for some of the most frequent and burdensome symptoms reported by people suffering from long COVID".

krcoombs — 2024-05-08 22:52:14 UTC

https://www.nih.gov/news-events/news-releases/nih-open-long-covid-clinical-trials-study-sleep-disturbances-exercise-intolerance-post-exertional-malaise

"A menu of accommodations along with individual job redesign efforts will help employers retain employees with long Covid and other chronic illnesses and enable these workers to contribute more than they could otherwise".

krcoombs — 2024-05-09 20:02:15 UTC

https://hbr.org/2024/05/long-covid-at-work-a-managers-guide

Recorded Global Long Covid ECHO Webinar Series: Exploring Clinical Practice and Research Past Session Resources

krcoombs — 2024-05-09 21:39:19 UTC

https://app.box.com/s/onh1ma57ttjpi2c19qqxvmdao0kd2nsr?utm_source=ACC+Communications&utm_campaign=5b21c91948-REPRESENTATIVE_DIGEST_

"We’ve implemented a series of accessibility improvements that should make Padlet smoother and easier for anyone who needs them".

krcoombs — 2024-05-10 00:30:54 UTC

https://padlet.blog/major-updates-to-accessibility/?utm_source=beamer&utm_medium=sidebar&utm_campaign=Major-improvements-to-accessibility&utm_content=imagelink

UK: "In addition to the Bill of Rights, in March the team have also developed and shared leaflets for healthcare professionals and for those of us with Long Covid".

krcoombs — 2024-05-11 13:32:10 UTC

https://www.longcovidsos.org/post/the-first-long-covid-sos-newsletter-has-arrived

Exclusive from OMF Directors: What motivated you to focus your research efforts on ME/CFS?

krcoombs — 2024-05-13 03:14:34 UTC

What motivated you to focus your research efforts on ME/CFS?

"According to Patel, more research needs to be done to better understand who experiences these post–COVID-19 conditions and why, whether populations disproportionately impacted by COVID-19 are at higher risk of these conditions, and whether cancer is one of these post–COVID-19 conditions".

krcoombs — 2024-05-16 01:06:05 UTC

https://www.ajmc.com/view/kashyap-patel-md-sees-link-between-covid-19-and-cancer-progression-calls-for-more-biomarker-testing

"The finding? That if you take blood from people with ME/CFS, and add it to healthy cells grown in the lab, it changes the cells’ behaviour, while blood from healthy people does not."

krcoombs — 2024-05-16 02:28:30 UTC

https://mecfsresearchreview.me/2024/05/08/researchers-hunting-for-something-in-the-blood-of-people-with-me/

"Clear and accurate communication about how respiratory pathogens spread is of the utmost importance globally".

krcoombs — 2024-05-16 02:32:11 UTC

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)00244-7/fulltext

CDC Releases Guidance for Preventing Spread of Infections in Schools to Keep Children Healthy and Learning

krcoombs — 2024-05-18 01:12:52 UTC

https://www.cdc.gov/media/releases/p-0517-guidance-k-12.html

"Long Dismissed, Chronic Lyme Disease Is Finally Getting Its Moment".

krcoombs — 2024-05-18 02:38:59 UTC

https://time.com/6974403/chronic-lyme-disease-research/

"And then of course, as I always say in all of my papers and lectures, you have to do a 10-minute stand test by measuring supine and standing blood pressure and heart rate on every Long Covid patients. And that’s how you spot those that have excessive postural tachycardia or their blood pressure dropping or so forth. So we have the tools".

krcoombs — 2024-05-20 14:50:55 UTC

https://erictopol.substack.com/p/svetlana-blitshteyn-on-the-front

“People within the long Covid community have lost their life insurance policies when they lost their jobs due to long Covid. Many who have sought new life insurance policies have been denied due to long Covid".

krcoombs — 2024-05-21 01:26:10 UTC

https://clearhealthcosts.com/blog/2024/05/getting-a-new-life-insurance-policy-will-longcovid-be-a-hindrance/

"The purpose is to summarize the available knowledge, including the advantages and disadvantages of care models in different populations and settings; provide a framework to characterize different long COVID models of care; identify representative models; and describe access and equity issues and future research needs".

krcoombs — 2024-05-21 02:00:05 UTC

https://www.acpjournals.org/doi/10.7326/M24-0677

"Our findings suggest that SARS-CoV-2 infection may affect the autonomic nervous system by inducing long-term changes in autonomic functions in working-age patients and may negatively impact on their work ability".

krcoombs — 2024-05-25 12:31:48 UTC

https://www.nature.com/articles/s41598-024-61455-y

"It is vital that this topic features more prominently in the medical curriculum, and in our medical textbooks, to avoid patient harm due to delayed or mis-diagnosis and mismanagement".

krcoombs — 2024-05-28 02:10:54 UTC

https://journals.sagepub.com/doi/full/10.1177/14782715241255977

"Imagine how difficult it can be to learn about their limits for a child or adolescent? and how difficult can be not to pass that limit, when maybe other peers involved in the same activity can easily exceed the limit"?

krcoombs — 2024-05-28 18:37:42 UTC

https://danilobuonsenso.substack.com/p/post-exertional-malaise-pem-explained?utm_source=profile&utm_medium=reader2

ME/CFS is often thought of as a disease only in adults. But children can also get ME/CFS.

krcoombs — 2024-05-28 18:44:00 UTC

https://www.cdc.gov/me-cfs/children/index.html

"When it becomes an issue of only the vulnerable are being impacted, then we start framing things in the lens of 'Oh, that's over. Because it doesn't impact me anymore, the one in power, the one making policy -- so it's over.' That's a problem. But the fact that it's happening to so many people all at once is the game-changer, right?"

krcoombs — 2024-05-30 19:27:10 UTC

https://youtu.be/QLLbmYUA5YE?si=5Sgsi4VEbZKYkfT7

"Scientific evidence on management, rehabilitation, and treatment strategies for children is scarce, and treatment based on pathophysiology does not yet exist. Therefore, we developed an experience-based clinical guideline with treatment options for PPCC".

krcoombs — 2024-06-01 12:20:03 UTC

https://journals.lww.com/pidj/fulltext/9900/a_multidisciplinary_approach__management_and.881.aspx

"We recognize that kids aren’t just little adults. They’re growing and developing. Because COVID is hitting kids at a time that their bodies are changing every day, the things that are happening can have longer-lasting effects than they do in adults".

krcoombs — 2024-06-01 12:21:43 UTC

https://covid19.nih.gov/news-and-stories/what-long-covid-looks-like-children-young-adults

"The onset of chronic disability associated with post-acute infection syndromes is not limited to the pathogens discussed in this article. Other pathogens, including Ebola virus, Coxiella burnetii, Chikungunya virus, West Nile virus and Camylobacter also have associations with long term chronic diseases".

krcoombs — 2024-06-01 12:24:22 UTC

https://asm.org/Articles/2024/May/From-Infection-to-Chronic-Illness-Learning-from-Lo

"This study corroborates the parents' struggle for acceptance of the children's problems in the health system"

krcoombs — 2024-06-03 21:42:39 UTC

https://www.pediatricnursing.org/article/S0882-5963(24)00205-7/fulltext

242 Page Consensus Study Report: Long-Term Health Effects of COVID-19: Disability and Function Following SARS-CoV-2.

krcoombs — 2024-06-06 02:20:27 UTC

https://nap.nationalacademies.org/read/27756/chapter/1

"The new report says that some health effects of Long COVID, including chronic fatigue and post-exertional malaise, cognitive impairment (sometimes referred to as “brain fog”), and autonomic dysfunction, can impair an individual’s ability to work or attend school for six months to two years or more after COVID-19 infection".

krcoombs — 2024-06-06 03:15:36 UTC

https://www.nationalacademies.org/news/2024/06/new-report-reviews-evidence-on-long-covid-diagnosis-risk-symptoms-and-functional-impact-for-patients

"Now a study in JAMA Internal Medicine shows this practice led to preventable COVID-19 cases in the SNFs and increased death rates. Furthermore, SNFs that reported staff and personal protective equipment (PPE) shortages saw bigger increases in COVID-19 morbidity and mortality".

krcoombs — 2024-06-06 14:52:25 UTC

https://www.cidrap.umn.edu/covid-19/placing-covid-patients-skilled-nursing-facilities-led-increased-cases-deaths-study-finds SNF=Skilled Nursing Facilities

"A new report commissioned by the SSA in 2022 captures what we know so far about long Covid, and hints at how the nation’s disability benefits system might need to shift in the wake of the pandemic".

krcoombs — 2024-06-07 02:38:14 UTC

https://www.statnews.com/2024/06/06/long-covid-disability-national-academy-of-sciences/

"Long COVID is an unwelcome guest that may steal your energy, sleep, ability to work or take care of family responsibilities, sense of well-being — even your life. Three doctors and a panel of people with long COVID symptoms came together to explore what’s on the horizon for patients".

krcoombs — 2024-06-08 11:20:46 UTC

https://news.emory.edu/features/2024/03/emag_long_covid_13-03-2024/

"Migraine commonly coexist with dysautonomia, HSD, and MCAS, forming a challenging triad that often goes undiscussed in scientific literature".

krcoombs — 2024-06-08 14:22:47 UTC

NeuroVoices: Svetlana Blitshteyn, MD, FAAN, on the Overlooked Triad of Comorbidities in Headache Medicine (neurologylive.com ) HSD: Hypermobility Spectrum Disorder, MCAS: Mast Cell Activation Syndrome

Detailed information and resources on the long-term health consequences of COVID-19 infection and the broad social impacts of the COVID-19 pandemic

krcoombs — 2024-06-09 02:03:40 UTC

https://libguides.mskcc.org/CovidImpacts/LCresources

"Available evidence seems to show it is also safe in children and there is already experience with other conditions".

krcoombs — 2024-06-09 14:52:47 UTC

https://open.substack.com/pub/danilobuonsenso/p/low-dose-naltrexone-ldn-and-long?r=a36iw&utm_campaign=post&utm_medium=web

"Could their new depression or anxiety be linked to COVID-19 and, if so, when did they have it?"

krcoombs — 2024-06-13 00:45:20 UTC

https://www.yalemedicine.org/news/depression-and-anxiety-in-long-covid-why-interdisciplinary-treatment-is-needed

Long COVID Basics. Updated June 11, 2024

krcoombs — 2024-06-13 01:16:21 UTC

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

"If all people, including neurodivergent people, were truly included in a community, accommodations would not be necessary because the community would adjust for all of its members. But we don’t adjust. We “accommodate.” Sort of".

krcoombs — 2024-06-13 22:21:01 UTC

https://www.psychologytoday.com/us/blog/living-neurodivergence/202406/what-is-the-invisible-burden-of-school-accommodations

"This juxtaposition thus serves to potentially shift our overall focus away from the nuances of the causative agent of each IACC and, instead, upon the (perhaps more relevant or revealing) shared etiological and pathophysiological commonalities among all IACC’s".

krcoombs — 2024-06-13 22:27:14 UTC

https://batemanhornecenter.dm.networkforgood.com/emails/3367200?recipient_id=ETUyG_N02v_zUgWGzwalBw||YW5nZWxhQGJhdGVtYW5ob3JuZWNlbnRlci5vcmc=

IACC=Infection Associated Chronic Condition

"Living with Long COVID". Updated June 11, 2024

krcoombs — 2024-06-14 14:57:19 UTC

https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/care-post-covid.html

"CDC Science and the public health approach to Long COVID". Updated 6/10/24

krcoombs — 2024-06-14 15:00:47 UTC

https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-science.html

"Antibodies isolated from people with long COVID increase pain sensitivity and reduce movement in mice when transferred to the animals, research shows".

krcoombs — 2024-06-14 15:15:27 UTC

https://www.nature.com/articles/d41586-024-02010-7

Latinos and African Americans suffer the highest rates of long COVID. Yet health care inequality and poor outreach have resulted in clinics with mostly white patient lists.

krcoombs — 2024-06-14 15:28:44 UTC

https://whyy.org/segments/the-short-reach-of-long-covid-care/

"Our findings of lower regional brain blood oxygen levels suggest increased cerebral metabolism in PCS, which potentially holds a compensatory function. These hemodynamic changes were related to symptom severity, possibly representing metabolic adaptations".

krcoombs — 2024-06-19 01:57:36 UTC

https://onlinelibrary.wiley.com/doi/10.1002/acn3.52121

"Women had slower recoveries despite a lower rate of severe infection. Sex differences in risk of long COVID, and particularly subphenotypes characterized by neurologic, musculoskeletal, and autoimmune conditions, could be explained by multiple mechanisms, including differences in the immune response and higher risk of autoreactivity and thrombosis in women (vs men), that merit further study".

krcoombs — 2024-06-19 23:44:59 UTC

https://www.cidrap.umn.edu/covid-19/study-identifies-female-sex-heart-disease-long-covid-risk-factors-vaccination-protective

A new analysis of data from 60 organisations and public health agencies has identified a large post-COVID global surge in common communicable diseases, including influenza, measles, tuberculosis, and whooping cough. Experts said that with no historical precedent, they can’t fully explain the resurgence in infectious diseases.

krcoombs — 2024-06-20 01:23:35 UTC

https://www.bmj.com/content/385/bmj.q1348

This study specifically characterized long COVID (LC) with ME/CFS. We demonstrated that Galectin-9 and Artemin are associated with ME/CFS in LC. This study links Galectin-9 with immune dysregulation in LC. We define CD71+ erythroid cells as a source of artemin in LC. N=199

krcoombs — 2024-06-22 18:32:46 UTC

Diverse immunological dysregulation, chronic inflammation, and impaired erythropoiesis in long COVID patients with chronic fatigue syndrome - ScienceDirect

“Our results clearly demonstrate that vaccination against COVID-19 significantly reduces mortality and serious complications among cancer patients, especially those who have received the booster dose".

krcoombs — 2024-06-22 20:57:55 UTC

https://www.technologynetworks.com/immunology/news/cancer-patients-develop-fewer-protective-antibodies-to-covid-19-387979

This Review uses evidence from epidemiological, clinical, and experimental studies to address the issue of the involvement of SARS-CoV-2 infection in the development of Type 1 diabetes mellitus.

krcoombs — 2024-06-23 13:09:00 UTC

https://www.nature.com/articles/s41574-024-01004-9

"A heart condition that plagues many COVID-19 patients and a misunderstood connective tissue disorder share some common links".

krcoombs — 2024-06-24 15:23:23 UTC

https://www.postandcourier.com/health/musc-eds-long-covid-nerve-stimulation/article_701ced58-28e1-11ef-8c5c-f738e4bcedb9.html

"I pointed this trend out to someone who was unaware of long COVID and the sheer number of people who appear to be suffering from it. “If many people are gradually developing long COVID,” they asked me. “Wouldn’t we see it in the economic data?” Yes, we would. And in fact, we are".

krcoombs — 2024-06-25 02:35:31 UTC

https://whn.global/with-millions-suffering-long-covid-is-devastating-the-economy/

“Today is about COVID but it’s more than that,” shared Dr. Levitt, quoting from the article, “‘The world must rise to the occasion to address these challenges. The health and wellbeing of future generations depend upon it.’”

krcoombs — 2024-06-25 14:51:45 UTC

The Saban Research Institute Hosts Annual Science Day With Focus on Long COVID Research | Children's Hospital Los Angeles (chla.org )

"Monday morning quarterbacking isn't just about criticizing RECOVER, it's about being constructive and providing the tools to make positive changes," said Al-Aly. He added that those at the top have been defensive of criticism, which is making matters worse. "We can't correct course if we don't make changes. We'll end up hitting the same wall again and again."

krcoombs — 2024-06-25 18:25:55 UTC

https://www.medscape.com/viewarticle/how-fix-1-6-billion-long-covid-program-experts-weigh-2024a1000bs4?form=fpf

"People with lived experience who have hypotheses about the mechanisms of their respective conditions generally do not have a platform to share their theories to direct future research outside of patient communities. The Journal aims to connect patients’ hypotheses directly with the research and scientific communities".

krcoombs — 2024-06-26 20:30:57 UTC

https://patientresearchcovid19.com/patient-generated-hypotheses-journal-issue-2-summer-2024/

"But some patients with Long Covid continue to have high autoantibody levels, and patients infected with SARS-CoV-2 have a significantly greater chance of developing multiple new autoimmune diseases than do uninfected people".

krcoombs — 2024-06-27 01:24:45 UTC

https://solvecfs.org/new-study-by-dr-akiko-iwasaki-finds-that-autoantibodies-can-drive-severe-neurological-symptoms-in-people-with-long-covid/

"Clayton Powers, DPT, discusses the basics of post-exertional malaise (PEM). - PEM definition- PEM symptoms- PEM triggers". 3:29 Min Video

krcoombs — 2024-06-27 02:14:48 UTC

https://youtu.be/UkS6L3Klc00?si=meHFrCNur7ypwsd8

“When disability rights are violated, those harmed deserve to be heard and should receive the support they need quickly and fairly. While the Department of Justice’s Mediation Program has made progress as a valuable tool to resolve ADA complaints, the DOJ has not regularly shared updates on the program’s performance with Congress or the American people for over a decade — and that has got to change".

krcoombs — 2024-06-29 02:43:50 UTC

https://www.huffpost.com/entry/tammy-duckworth-protections-disabled-americans-justice-department_n_667cc4afe4b017bda37b8ba9

Wikipedia Page that addresses long COVID Signs and symptoms, Potential causes and mechanisms, Diagnosis, Prevention, Clinical care, Prognosis, etc.

krcoombs — 2024-07-02 17:45:35 UTC

https://en.wikipedia.org/wiki/Long_COVID#Pathophysiology

New website: Long COVID is a Global Public Health Crisis

krcoombs — 2024-07-02 19:07:18 UTC

https://www.longhauler-advocacy.org/

"COVID-19 has peaks in the winter and also at other times of the year, including the summer, driven by new variants and decreasing immunity from previous infections and vaccinations".

krcoombs — 2024-07-04 23:51:05 UTC

https://www.cdc.gov/ncird/whats-new/covid-19-can-surge-throughout-the-year.html

"It’s logical for NHLBI to be part of RECOVER because of the vascular effects of COVID-19. Blood clotting is part of how this virus affects the body. We’re making progress in the RECOVER consortium of institutes across NIH".

krcoombs — 2024-07-07 02:14:56 UTC

https://www.agrisafe.org/meet-the-director-gary-h-gibbons-m-d-national-heart-lung-and-blood-institute/

Archive section 3/24-8/23

krcoombs — 2024-07-08 14:45:21 UTC

https://padlet.com/krcoombs/news-and-media-archive-8-23-3-24-yzfttux3clavcl4d

Archive breakout link

krcoombs — 2024-07-08 16:28:23 UTC

https://padlet.com/krcoombs/us-legislative-response-pandemic-health-emergency-phe-ending-xi25fg6f3vx164yt

"The establishment of the Charles M. Vallee biorepository holds tremendous potential for advancing our understanding of Long COVID and its underlying mechanisms. By collecting and storing high-quality samples, researchers will have a valuable resource at their disposal to conduct a wide range of studies".

krcoombs — 2024-07-08 16:51:20 UTC

https://charlesmvalleefoundation.org/initiatives/the-charles-m-vallee-biorepository

Breakout Padlet Link

krcoombs — 2024-07-08 19:34:48 UTC

https://padlet.com/krcoombs/resources-for-vermont-hdxyzela24aug4y6

McAlpine helped found and directs the NeuroCOVID Clinic at Yale and is an expert on neurologic sequelae of COVID-19. Neuro-PASC is a persistent and elusive neurologic condition that occurs after acute COVID-19 infection. Its symptoms include cognitive impairment, headaches, and dizziness.

krcoombs — 2024-07-09 17:51:38 UTC

https://medicine.yale.edu/news-article/mcalpine-wins-grant-to-elucidate-causes-of-neuro-pasc/

Inclusive Health, Learn how people with disabilities can prevent or manage type 2 diabetes, Certain Medical Conditions and Risk for Severe COVID-19 Illness, Many Adults with Disabilities Report Frequent Mental Distress, Disability and Health Data Now.

krcoombs — 2024-07-10 20:57:29 UTC

Learn About Disability and Health | CDC

"This form of COVID creates unique challenges in treatment options for patients as their symptoms persist beyond the acute COVID-19 infection. Here are some important resources to understand and combat long COVID".

krcoombs — 2024-07-10 21:09:42 UTC

Long COVID-19 (aaaai.org )

The reason I made this video is to raise awareness of severe ME and also because of the lack of care that people with ME, especially severe ME, receive.

krcoombs — 2024-07-11 18:11:24 UTC

https://www.me-gids.net/nieuwsartikel/trial-by-error-de-nieuwe-video-van-anil-van-der-zee-over-leven-met-ernstige-me/

They found 9.3% of those who were infected with the virus during pregnancy went on to experience long COVID symptoms. "It was surprising to me that the prevalence was that high".

krcoombs — 2024-07-13 19:52:17 UTC

https://www.scrippsnews.com/health/nearly-1-in-10-people-who-get-covid-19-while-pregnant-will-develop-long-covid-new-study-finds

"Adults who reported having a disability were significantly more likely to suffer from long COVID symptoms than those without a disability. The CDC says people with disabilities or respiratory problems are more susceptible to long COVID".

krcoombs — 2024-07-17 22:02:23 UTC

https://www.upi.com/Health_News/2024/07/16/disabilities-long-covid-CDC/5581721168283/

"The researchers found that having COVID-19 rapidly accelerated the structural and functional brain deterioration of patients with dementia, regardless of the type of dementia being experienced". N=14

krcoombs — 2024-07-18 02:22:36 UTC

https://covid19.nih.gov/news-and-stories/rapid-progression-dementia-following-covid-19

It advances infectious disease capacity through six robust public health programs and a range of disease-specific projects and includes flexible support to address emerging threats and outbreaks.

krcoombs — 2024-07-19 13:53:04 UTC

Programs & Projects: Structure of ELC | Epidemiology and Laboratory Capacity | CDC

"Older adults are more likely to experience severe COVID-19, which has long been linked to a higher risk of long-term complications. And they may have had preexisting cognitive issues that become worse after infection".

krcoombs — 2024-07-20 17:00:24 UTC

https://time.com/7000672/covid-19-brain-damage-older-people/

Some of the symptoms of ‘long COVID’ are similar to MS symptoms. And people with multiple sclerosis could be more likely to have a slow recovery from COVID-19.

krcoombs — 2024-07-23 23:25:24 UTC

https://www.mssociety.org.uk/living-with-ms/physical-and-mental-health/ms-and-coronavirus-care-and-support/long-covid-and-multiple-sclerosis-ms

Role of the non-canonical inflammasome in SARS-CoV-2-mediated pathology and coagulopathy: 15M NIH grant at Ohio State University.

krcoombs — 2024-07-24 11:56:16 UTC

https://news.osu.edu/finding-a-solution-for-long-covid-one-cell-type-at-a-time/

In addition to RECOVER, other groups have been studying long COVID in children, including the Collaborative Long-term study of Outcomes of COVID-19 in Kids (CLOCK) consortium at Rutgers and the PreVAIL kids team.

krcoombs — 2024-07-26 21:20:50 UTC

https://www.medpagetoday.com/special-reports/exclusives/99264

Long COVID not only leads to a significant symptomatic burden for several months following acute infection, but also impacts athletes' ability to engage in exercise as a whole, leads to worse dyspnea with everyday activities, and impairs athletes’ 'mobility and ability to engage in usual activities such as work, study, and housework. N=45

krcoombs — 2024-07-27 17:28:50 UTC

https://onlinelibrary.wiley.com/doi/full/10.1002/pul2.12413

PANS—Pediatric Acute-Onset Neuropsychiatric Syndrome—is a challenging disorder that may be triggered by a variety of infections. Can happen in Adults too.

krcoombs — 2024-07-27 17:37:50 UTC

https://www.lymedisease.org/kinderlehrer-infections-pans/

DiSilvio said many of her patients have gotten COVID two or three times in the last year, and these infections have exacerbated existing heart and lung conditions.

krcoombs — 2024-07-28 22:35:54 UTC

https://www.post-gazette.com/news/health/2024/07/28/cdc-study-us-disability/stories/202407280036

C19 NIH Therapeutic Treatment Guidance, to be taken off-line on 7/16/24, covers Immunocompromised, Children and Adults who are hospitalized or non-hospitalized.

krcoombs — 2024-07-31 22:47:44 UTC

https://www.covid19treatmentguidelines.nih.gov/

The Long COVID Research Moonshot Act proposed by Senator Sanders aims to establish a comprehensive federal response to Long COVID by funding biomedical research, enhancing public health surveillance and education, and providing support for individuals affected by the condition through targeted rehabilitation and social services.

krcoombs — 2024-08-02 19:46:22 UTC

https://www.sanders.senate.gov/press-releases/news-sanders-introduces-historic-moonshot-legislation-to-address-the-long-covid-crisis/

SSA should address the barriers those living with Long COVID face in accessing the benefits they have earned. There are straightforward steps SSA can take to make the disability application process easier and more transparent.

krcoombs — 2024-08-05 20:41:46 UTC

Kaine, Duckworth, Markey Press Social Security Administration to Help Those with Long COVID Overcome Barriers to Disability Benefits | 2024-08-05 (senate.gov)

MIS-C: They also found that children with MIS-C had an unusual immune response to the coronavirus: They made antibodies to a part of the viral nucleoprotein that the other children who had severe Covid did not.

krcoombs — 2024-08-08 14:49:43 UTC

https://www.nytimes.com/2024/08/07/health/misc-autoimmune-children.html

Patient Resources such as Symptom Tracking, Finding a Doctor, Work, School, and Finances, Post Exertional Malaise (PEM) and Pacing, Children and Teens with ME/CFS or Long Covid.

krcoombs — 2024-08-09 17:39:26 UTC

https://solvecfs.org/me-cfs-long-covid/patient-and-caregiver-resources/

Mice given antibodies show signs of Long COVID symptoms

krcoombs — 2024-08-10 12:07:34 UTC

https://www.yalemedicine.org/news/antibodies-from-long-covid-patients-provide-clues-to-autoimmunity-hypothesis

"New survey data from the landmark Women's Health Initiative (WHI) reveal that 34% of postmenopausal women infected with COVID-19 had symptoms lasting at least 8 weeks, while a separate 2-year telemedicine study shows that 84% and 61% of all infected patients still had symptoms 1 and 2 years later, respectively".

krcoombs — 2024-08-13 02:42:40 UTC

https://www.cidrap.umn.edu/covid-19/new-studies-estimate-long-covid-rates-identify-risk-factors

"To redress this shameful lack of recognition of the massive efforts that people with lived experience of Long COVID have made, and continue to make, to the body of medical and social science knowledge about Long COVID, I have made a timeline of their crucial contributions in the early months of the pandemic".

krcoombs — 2024-08-13 03:00:36 UTC

https://simplysociology.wordpress.com/2024/08/13/the-vital-contribution-made-by-patients-to-long-covid-knowledge/

Our findings suggest that even highly symptomatic long COVID may have no clinically observable objective findings on routine laboratory testing.

krcoombs — 2024-08-15 02:43:27 UTC

https://www.cidrap.umn.edu/covid-19/routine-lab-tests-cant-reliably-distinguish-long-covid-other-illnesses-nih-study-suggests

A study led by Albany Medical Center researchers has shown that the blood DNA methylation levels of long Covid patients differ from those of healthy patients, and that long Covid patients share the same blood biomarkers even when they have different symptoms.

krcoombs — 2024-08-15 10:25:38 UTC

https://www.albanymed.org/news/study-identifies-profile-of-long-covid/

Registration Now Open for RECOVER-TLC Kick-off Meeting, September 23-25, 2024. RECOVER-TLC = A new program called RECOVER-Treating Long COVID (TLC) will develop and launch additional Long COVID clinical trials.

krcoombs — 2024-08-16 14:41:05 UTC

https://recovercovid.org/news/registration-now-open-recover-tlc-kick-meeting-september-23-25-2024

Even years into the pandemic, medical professionals are still figuring out how best to treat people with Long COVID, let alone advise athletes on managing it (if they are still able to exercise at all).

krcoombs — 2024-08-17 11:37:34 UTC

https://thesicktimes.org/2024/08/16/grappling-with-long-covid-as-an-elite-athlete/

About 14% of participants in a new long-COVID study from Yale said they didn't return to work in the months after their infection, suggesting that the condition results in major economic losses.

krcoombs — 2024-08-17 11:40:35 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-leads-missed-work-days-economic-loss

Kids’ long COVID involves persistent symptoms like fatigue, headaches, abdominal pain, and mood changes weeks or months after initial infection. It can impact daily activities and school performance.

krcoombs — 2024-08-17 16:32:44 UTC

https://longcovidtheanswers.com/category/kids-pediatrics/

Proteins left behind by COVID-19 long after initial infection can cause cortisol levels in the brain to plummet, inflame the nervous system and prime its immune cells to hyper-react when another stressor arises, according to new animal research by CU Boulder scientists.

krcoombs — 2024-08-20 11:37:33 UTC

https://www.colorado.edu/today/2024/08/19/low-cortisol-may-play-role-fueling-long-covid-study-suggests

Study cited: https://www.sciencedirect.com/science/article/abs/pii/S0889159124005105

How long does COVID-related pink eye last? Viral pink eye typically goes away within five to seven days and can last up to two weeks or longer if you’re continuing to experience additional symptoms of COVID-19 and/or other eye symptoms like red, dry, or watery eyes and blurred vision, eye pain, itch/irritation, sensitive to light.

krcoombs — 2024-08-26 22:25:14 UTC

https://health.clevelandclinic.org/covid-pink-eye

Under no circumstances should they be bullied or singled out, often by people whose connection to science and current affairs is so feeble that they believe COVID-19 has ‘gone away’ and are shocked when they are reinfected.

krcoombs — 2024-08-30 00:00:25 UTC

https://johnsnowproject.org/primers/leave-those-kids-alone/

People with preexisting disabilities experienced and continue to experience increased exposure to COVID-19 and barriers to accessing health care, COVID-19 vaccines, and COVID-19 tests. These barriers, combined with long-standing health disparities in this population, may have contributed to the greater prevalence of long COVID among people with disabilities.

krcoombs — 2024-08-31 01:25:20 UTC

https://ajph.aphapublications.org/doi/10.2105/AJPH.2024.307794

The new work funded by the NIH will go beyond the study of the lungs and into how this molecule may impact the brain and the rest of the body, interfering with immune responses and possibly resulting in more blood clots in pathways leading to the brain and other vital organs – an entertained explanation for why Long COVID impacts people differently from case to case.

krcoombs — 2024-08-31 11:48:34 UTC

https://www.dispatch.com/story/news/healthcare/2024/08/14/osu-gets-15-million-to-study-little-understood-long-covid/74779389007/

The findings could help shed light on how MIS-C and other autoimmune diseases develop after viral infections.

krcoombs — 2024-09-03 00:53:09 UTC

https://www.nih.gov/news-events/nih-research-matters/how-sars-cov-2-might-cause-dangerous-inflammation-children

WHO Resource for Member States. Comprehensive guidance on the studies needed to investigate the origins of emerging and reemerging pathogens, as timely investigations into pathogens’ origins are critical for preventing and containing global health crises and provide the basis for stopping outbreaks before they begin, halting transmission chains, and reducing the risk of pathogen spillover from animals to humans.

krcoombs — 2024-09-05 02:44:56 UTC

https://www.who.int/publications/m/item/who-global-framework-to-define-and-guide-studies-into-the-origins-of-emerging-and-re-emerging-pathogens-with-epidemic-and-pandemic-potential

Houston Health Department opens COVID-19 testing centers as surge happens nationwide. 9/4/24

krcoombs — 2024-09-05 17:01:35 UTC

https://www.houstonchronicle.com/health/article/houston-covid-19-health-department-19739129.php

The new research suggests that this harmful cycle of inflammation, injury and fibrosis can be broken using drugs such as baricitinib and anakinra, both of which have already been approved by the Federal FDA to treat the harmful inflammation seen in rheumatoid arthritis and alopecia, a form of hair loss.

krcoombs — 2024-09-05 20:04:26 UTC

https://newsroom.uvahealth.com/2024/09/05/cause-potential-treatment-idd-for-persistent-covid-19-lung-problems/

Sérgio Mendes, the Brazilian-born musician who brought bossa nova music to a global audience in the 1960s, died on Thursday, Sept 5th. His family said that his death was caused by effects of long Covid.

krcoombs — 2024-09-09 11:52:41 UTC

https://people.com/sergio-mendes-dead-age-83-long-covid-8708012

https://www.youtube.com/watch?v=R7GsuqCTnQc&list=PLgKSeYgxb-TaCugGB4Q-nTWk86FqnP2HE

Over 40% of COVID-19 survivors who had disabilities before the pandemic had symptoms for 3 months or longer in 2022, compared with 19% of those without disabilities, further widening health disparities.

krcoombs — 2024-09-10 02:13:00 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-rate-among-disabled-people-double-able-bodied

Three senior figures at the US National Institutes of Health explain why the agency remains committed to supporting basic science and research.

krcoombs — 2024-09-12 01:39:13 UTC

https://elifesciences.org/articles/102368

Millions of people worldwide, especially Black Americans, are experiencing long-term health effects after recovering from COVID-19, a condition known as Long COVID. While the initial stages of the pandemic saw significant progress in diagnosing and managing the virus itself, Long COVID remains a major public health challenge.

krcoombs — 2024-09-13 01:24:30 UTC

https://blackdoctor.org/long-covid-clinical-trial/

Females are more frequently affected by Long COVID than males, highlighting distinct immunological processes and hormonal variations.

krcoombs — 2024-09-13 01:31:29 UTC

https://www.contagionlive.com/view/sex-specific-immune-and-hormonal-factors-reveal-how-long-covid-impacts-genders-differently

It recommends improvements in the consistency and quality of national wastewater sampling, testing, and data analysis, and identifies research and technology development needs for a national wastewater surveillance system that can serve ongoing and changing public health needs in the United States.

krcoombs — 2024-09-14 19:53:56 UTC

https://nap.nationalacademies.org/catalog/27516/increasing-the-utility-of-wastewater-based-disease-surveillance-for-public-health-action

APHIS veterinarians, wildlife professionals, epidemiologists, and other experts are working to better understand, identify, and control SARS-CoV-2 in animals.

krcoombs — 2024-09-15 23:49:06 UTC

https://www.aphis.usda.gov/sars-cov-2

Kennedy Krieger’s Pediatric Post-COVID-19 Rehabilitation Clinic, reveals that OI is prevalent among children dealing with the long-term effects of the COVID-19 virus. Researchers found 71% of the patients studied at the Institute experienced at least one orthostatic condition. N=65/92

krcoombs — 2024-09-17 02:28:16 UTC

https://www.kennedykrieger.org/stories/news-and-updates/research-news-releases/new-study-reveals-majority-pediatric-long-covid-patients-develop-dizziness-known-orthostatic-intolerance

The hypothesis that patients with established long COVID and evidence of viral persistence could also respond to antiviral therapy is plausible and should be thoroughly evaluated.

krcoombs — 2024-09-18 02:40:35 UTC

https://www.cidrap.umn.edu/covid-19/evidence-growing-covid-antivirals-cut-poor-outcomes-long-covid-experts-say

On a day-to-day basis, these symptoms can severely limit the lives of Long COVID patients. Simple activities like walking, cooking, or even concentrating on a task can lead to extreme exhaustion and crashes. Many people find themselves needing to carefully manage their energy levels, sometimes referred to as “pacing,” to avoid triggering PEM. This often means cutting back on social activities, work, and even basic self-care.

krcoombs — 2024-09-18 03:45:55 UTC

https://whn.global/living-with-long-covid/

A common strategy to neutralize a social problem is to make it difficult to know about—by scaling back COVID tracking, for instance. In April the CDC ended the requirement that hospitals report COVID admissions and occupancy data, removing one of the last tools we could use to monitor what’s happening. “We now enter the blackout phase of epidemiology,” wrote science journalist Laurie Garrett in May on X, adding: “There will be patients, but their numbers and whereabouts will be unknown...

krcoombs — 2024-09-19 02:40:57 UTC

https://www.scientificamerican.com/article/weve-hit-peak-denial-heres-why-we-cant-turn-away-from-reality/

Late 2019- Mid 2022: This timeline provides information about select moments in the COVID-19 pandemic in the United States and around the world beginning from its known origins to today.

krcoombs — 2024-09-20 17:44:23 UTC

https://www.cdc.gov/museum/timeline/covid19.html

She wants employers to understand that disability is not a monolith, and disabled workers are not just a diversity statistic. “There are more than a billion experiences of disability around the world,” Ladau said. “So you can’t just condense those experiences into a number or a statistic.”

krcoombs — 2024-09-20 20:07:14 UTC

https://www.hr-brew.com/stories/2023/11/17/what-disabled-workers-expect-from-companies-beyond-national-disability-employment-awareness-month

We highlight the challenges that virology will face moving forward—not just the scientific and technical but also the social and political. Although there are inherent limitations in trying to outline the virology of the future, we hope this article will help inspire the next generation of virologists.

krcoombs — 2024-09-20 21:02:29 UTC

https://www.cell.com/cell/fulltext/S0092-8674(24)00785-2

My name is Danilo Buonsenso, I am a paediatrician with expertise in Pediatric Infectious Diseases, Lung Ultrasound, Pediatric Emergency Care and Global Health

krcoombs — 2024-09-22 15:51:45 UTC

https://danilobuonsenso.substack.com/

https://danilobuonsenso.substack.com/p/long-covid-is-real-also-in-children

https://danilobuonsenso.substack.com/p/tissue-oxygenation-and-post-covid

Introducing Long COVID Essentials, a new resource series

krcoombs — 2024-09-23 22:29:14 UTC

https://thesicktimes.org/2024/09/16/introducing-long-covid-essentials-a-new-resource-series/

Just as many organizations learned during quarantine that much more flexibility in the workplace is possible than previously thought, many will learn that much kinder and more inclusive cultures are possible. Organizations will also learn that flexibility and inclusion are not just possible but profitable.

krcoombs — 2024-09-24 16:22:28 UTC

https://www.fastcompany.com/91193756/long-covid-inclusion-how-to-make-your-work-more-inclusive

Mito explains how our bodies, like phones, require energy to run the "apps" of daily life. For individuals with ME/CFS, this energy is drastically limited, leading to a debilitating and often misunderstood condition.

krcoombs — 2024-10-02 02:18:19 UTC

https://youtu.be/gKWk99Fsd_o?si=F4MHPf9U7-aAY93c

The project will determine if live SARS-CoV-2 infection of human brain cell models leads to protein formation and gene changes connected to Alzheimer’s disease, Parkinson’s disease, or TDP43-associated dementia. A second series of experiments is measuring the detrimental impact of SARS-CoV-2 spike protein on brain cells such neurons, microglia, and oligodendrocytes.

krcoombs — 2024-10-03 23:20:03 UTC

https://polybio.org/projects/impact-of-sars-cov-2-infection-on-alzheimers-and-neurodegenerative-disease/

The project is the first in the world to use advanced positron emission tomography (PET) imaging to test the hypothesis that Long COVID symptoms could result in part from fibrin accumulation in body sites such as the lung, heart, and brain.

krcoombs — 2024-10-05 14:54:03 UTC

https://polybio.org/projects/evaluation-of-tissue-fibrin-accumulation-and-perfusion-in-long-covid-via-fibrin-pet-imaging-peripheral-blood-analysis/

Atinuki “Tinu” Abayomi-Paul, a prominent writer and disability advocate, died on September 26 at home in Texas. She was 52. Abayomi-Paul was well known in the Long COVID and disability community for her writing, speaking, and mutual aid organizing.

krcoombs — 2024-10-05 16:26:29 UTC

https://thesicktimes.org/2024/10/04/tinu-abayomi-paul-writer-disability-advocate-and-person-with-long-covid-dies-at-52/

https://www.everywhereaccessible.com/

“The whole education system is really set up to achieve, and when the young person is not able to do that because health challenges take over, there's an enormous sense of loss, grief and disappointment".

krcoombs — 2024-10-07 11:53:38 UTC

https://www.salon.com/2024/10/06/for-kids-with-long-covid-back-to-school-often-means-not-returning-at-all/

The fact that we see abnormalities in the parts of the brain associated with breathing strongly suggests that long-lasting symptoms are an effect of inflammation in the brainstem following Covid-19 infection

krcoombs — 2024-10-08 20:50:26 UTC

https://www.cidrap.umn.edu/covid-19/brain-imaging-reveals-changes-linked-long-covid

What is the future of a country that allows an untold number of its people to suffer and die unnecessarily because of a lack of access to basic health services, inadequate public health measures, and a tattered social safety net? Can it survive and thrive?

krcoombs — 2024-10-09 23:40:15 UTC

https://www.nejm.org/doi/full/10.1056/NEJMp2410855

Many people with Long COVID develop a condition called dysautonomia, in which your autonomic functions (or things your body does by itself, like heart beating) are disturbed.

krcoombs — 2024-10-10 18:06:20 UTC

https://longcovidjustice.org/dysautonomia/

But perhaps the worst part for Jospa is that she says she's often treated like she's not telling the truth. Teachers and doctors shrug off her symptoms as those of an overly dramatic teenager. "Doctors would constantly say that tests showed I was fine, but I wasn 't fine.

krcoombs — 2024-10-13 19:26:33 UTC

https://www.medscape.com/viewarticle/long-covid-rates-kids-revised-upward-what-know-2024a1000hzi

Understanding shared mechanisms: Cross-condition research is not meant to replace specific research for individual diseases but to balance it. Each condition requires independent research to fully understand its unique traits, but shared mechanisms across these conditions could accelerate progress for all.

krcoombs — 2024-10-16 03:04:43 UTC

https://www.lymedisease.org/complexities-long-haul/

Observational studies and clinical experience have linked signs and symptoms of MCAS with other inflammatory chronic conditions such as hypermobile Ehlers-Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis/chronic fatigue syndrome, and recently, long COVID.

krcoombs — 2024-10-16 03:08:09 UTC

https://www.medscape.com/viewarticle/does-mast-cell-activation-syndrome-underlie-multiple-ills-2024a1000isk

For the first time, data from pediatric participants in the Researching COVID to Enhance Recovery (RECOVER) Initiative are being made available to the public and research community. The dataset, released in BDC on October 17th, 2024, contains survey and laboratory results from more than 24,000 young adults, children, infants, and their caregivers who participated in more than 62,000 study visits at 115 enrolling sites across the country between March 17, 2022, and June 15, 2024.

krcoombs — 2024-10-18 22:39:03 UTC

https://biodatacatalyst.nhlbi.nih.gov/latest-updates/recover_first_peds_data/

ME/CFS & Long COVID Studies List of Medical Research and Science Articles on Post-Acute Infection Sequelae from the 1950s to Today

krcoombs — 2024-10-22 01:30:35 UTC

ME/CFS & Long COVID Studies https://amandafrancey.medium.com/me-cfs-long-covid-studies-5f91f6ad6b59

About the Medium creator who compiled research studies: Illustrator and graphic designer by profession. Compelled to write about important topics close to my heart.

Long COVID, a major public health crisis, is also becoming a significant economic crisis

krcoombs — 2024-10-23 02:55:29 UTC

Long COVID, a major public health crisis, is also becoming a significant economic crisis

In this population of healthy young adult US Marines with mostly either asymptomatic or mild acute COVID-19, one fourth reported physical, cognitive, or psychiatric long-term sequelae of infection. The Marines affected with PASC showed evidence of long-term decrease in functional performance. N=899 Marines

krcoombs — 2024-10-24 19:07:02 UTC

https://www.thelancet.com/journals/lanam/article/PIIS2667-193X(24)00236-9/fulltext

The collaboration, called the North American Preparedness for Animal and Human Pandemics Initiative, or NAPAHPI, has been described as a "flexible, scalable, cross-sectoral" platform which aims to strengthen regional capacities for disease control, built on lessons learned from COVID-19 and other healthy security events.

krcoombs — 2024-10-26 17:43:45 UTC

https://www.newsweek.com/us-government-new-pandemic-plan-covid-canada-mexico-1974278

f you’re an adult applying for disability benefits, use this checklist to get ready for your phone or in-person interview or as you prepare to complete your online application: Adult Disability Starter Kit.

krcoombs — 2024-10-29 14:57:39 UTC

Ensure Your Application for Disability Benefits Is Complete | SSA

Adult Disability Starter Kit (ssa.gov )

While the researchers can’t definitively show that persistent infections are the cause of some Long COVID symptoms, the findings add to growing evidence that low levels of viral protein being present may explain some but not all cases of Long COVID. The authors and many other researchers suspect that Long COVID likely has multiple underlying causes.

krcoombs — 2024-10-31 19:42:46 UTC

https://directorsblog.nih.gov/2024/10/31/many-people-with-long-covid-have-signs-of-persistent-sars-cov-2-proteins-new-findings-show/

We are a global scientific collaboration rapidly studying core biological drivers of long COVID and related conditions.This interactive module is designed to facilitate knowledge of our research and therapeutic projects, technologies, and findings across international institutions.

krcoombs — 2024-11-01 21:54:11 UTC

https://polybio.org/consortium-project-explorer/

Underrepresented communities have faced unique challenges and disparities that exacerbate the impact of Long COVID. Minority communities demand immediate attention and targeted interventions from healthcare providers, policymakers, and community members will be discussed. (TX Southern U webinar)

krcoombs — 2024-11-05 21:05:32 UTC

https://www.centerfortransformativehealth.com/lecture-series/v/beyond-the-symptoms-understanding-long-covid

This research aims to identify which specific muscle cells are involved in the pain and fatigue that arise during Post Exertional Malaise (PEM).

krcoombs — 2024-11-09 15:53:28 UTC

https://vu.nl/en/news/2024/rob-wust-receives-zonmw-grant-for-research-into-long-covid

More than 12 million dengue cases and 8000 dengue related deaths have been reported in 86 countries or territories. (2024)

krcoombs — 2024-11-10 19:11:24 UTC

https://www.bmj.com/content/387/bmj.q2391

CURE ID is a platform that was originally developed for infectious diseases broadly but has been expanded to long covid ... there are zero approved treatments for long Covid.

krcoombs — 2024-11-11 00:08:47 UTC

https://www.youtube.com/watch?v=v5kuSNQtSz4

"A lot more could be said about the profound loss I’ve felt professionally, physically, personally, and socially, but I instead want to focus on actionable items that anyone reading this can do to help support future care for this rapidly growing group of people affected by these illnesses".

krcoombs — 2024-11-11 18:19:13 UTC

https://www.yalemedicine.org/news/when-long-covid-worsens-preexisting-chronic-conditions

This is a recording of a medical education mini-symposium on ME/CFS and Long COVID held at University of Massachusetts Chan Medical School on October 4, 2024.

krcoombs — 2024-11-12 02:04:04 UTC

https://youtu.be/-qs17vNlFK8?si=uQcLzbAWeMr8SxPz

The 2024 Comprehensive Guide to Long COVID is our second volume. Nearly 5 years into the pandemic, public messaging and education on Long COVID remains inadequate, leaving critical gaps in understanding and addressing this condition's long-term impacts.

krcoombs — 2024-11-13 03:22:55 UTC

https://83fdfbfe-d01d-4fc1-8c68-86ef6e148cb5.usrfiles.com/ugd/83fdfb_db788a656c024c94842f3b1575d608c8.pdf

C19LAP= COVID 19 Longhauler Advocacy Project https://www.longhauler-advocacy.org/team-community

At this point, more than four years in, “NIH should be laser-focused, laser-focused on finding treatment for long COVID,” Dr. Al-Aly said. (4:48 mins)

krcoombs — 2024-11-13 04:11:33 UTC

https://www.marketplace.org/2024/11/11/nih-got-1-6-billion-for-research-into-long-covid-where-are-the-treatments/

This blog discusses an approach to minimize PEM by pacing activities with a heart rate monitor (HRM). When appropriately executed, pacing with an HRM will interrupt the boom-bust energy cycle and minimize PEM.

krcoombs — 2024-11-16 15:04:52 UTC

https://workwellfoundation.org/pacing-with-a-heart-rate-monitor-to-minimize-post-exertional-malaise-pem-in-me-cfs-and-long-covid/

For the second consecutive year, funding will expand a Harvard Medical School-based project documenting immune, coagulation, and blood vessel abnormalities in both adult and pediatric long COVID patients

krcoombs — 2024-11-16 20:44:59 UTC

https://polybio.org/wallace-foundation-grant/

On Friday, November 8, we held an online Symposium where PolyBio-supported researchers will present updates on their projects. Videos of the presentations are below.

krcoombs — 2024-11-17 22:08:57 UTC

https://polybio.org/fall-2024-symposium/

Below is a current list of post-infection illness experts. This list represents only individuals who have confirmed their area(s) of expertise.

krcoombs — 2024-11-18 13:36:36 UTC

https://recovercovid.org/sites/default/files/docs/508C-PostInfectionIllnessExpertList.pdf

He explains his findings on "preload failure," which affects blood flow during exercise, and how small nerve fiber problems can impact blood vessels. Dr. Systrom also shares possible treatments from his recent clinical trials using pyridostigmine and low-dose naltrexone, which may help improve exercise ability and overall health for those affected.

krcoombs — 2024-11-18 17:38:33 UTC

https://youtu.be/TD-eSXKvfq0?si=MXaUQmVpJgRfsrol

People affected by Long Covid have been at the center of RECOVER from the very beginning, playing critical roles in designing studies, responding to surveys, serving on governance and publication groups, and guiding the initiative.

krcoombs — 2024-11-19 03:11:54 UTC

https://www.science.org/doi/10.1126/scitranslmed.adr9971

RECOVER has five major components: longitudinal cohort studies, pathobiology studies, electronic health records research, autopsy and tissue pathology studies, and clinical trials (recovercovid.org/research-components).

Long COVID is a post-infection, multisystemic condition

krcoombs — 2024-11-19 23:38:43 UTC

https://disease.education/us/covid/long-covid

Facilities will, thus, have higher rates of spread than found in communities. Not having a policy of universal masking poses a definite risk to immunocompromised patients and a possible violation of the ADA.

krcoombs — 2024-11-21 01:01:58 UTC

https://www.infectioncontroltoday.com/view/cdc-hicpac-considers-new-airborne-pathogen-guidelines-amid-growing-concerns

"The impact of this condition causing disproportionate morbidity and disability in younger adults in their prime, who provide much of the workforce, productivity, and innovation in our society, may lead to critical issues..." N= 200 hospitalized and 1100 nonhospitalized patients.

krcoombs — 2024-11-23 22:37:51 UTC

https://medicalxpress.com/news/2024-11-younger-patients-affected-neurologic-manifestations.html#google_vignette

COVID-19 infection was associated with significantly higher odds of developing alopecia, vitiligo , Behçet disease , Crohn’s disease, ulcerative colitis, rheumatoid arthritis, lupus, ankylosing spondylitis, and bullous pemphigoid than controls.

krcoombs — 2024-11-24 03:19:29 UTC

https://www.medscape.com/viewarticle/long-term-risk-autoimmune-autoinflammatory-skin-disorders-2024a1000l5c?&icd=login_success_email_match_fpf

In this session, our expert panel discusses the current state of care for Long COVID and IACCs, key areas that need improvement, the role of technology and innovation in expanding access, and the barriers faced by marginalized communities in accessing care.

krcoombs — 2024-11-25 19:28:29 UTC

https://www.youtube.com/watch?v=NZfmL_zeLQo

While the condition can afflict anyone and can be life-altering regardless of a person’s wealth, a growing body of evidence suggests that those in the low- and middle-income brackets are more likely to develop long COVID, to suffer longer with its symptoms and to endure job loss, eviction and other serious consequences because of it.

krcoombs — 2024-11-27 21:15:00 UTC

https://www.cincinnati.com/story/news/2024/11/23/long-covid-hits-poor-and-middle-income-americans-harder/74921941007/

Dr. Torri Metz and Leyna Aragon from the RECOVER team discuss: How often pregnant people get Long COVID, Which symptoms were the most common, Why these findings are important for patients and doctors, Why this research is important for future studies and how it can help us better understand and treat Long COVID.

krcoombs — 2024-11-27 21:17:56 UTC

https://www.youtube.com/watch?v=R0oRIDRly3o

Jamie offers practical tips on preparing simple, healthy meals, understanding the stages of illness, and creating a less stressful environment. Together, they emphasize how small changes can significantly improve quality of life.

krcoombs — 2024-12-06 02:51:58 UTC

https://youtu.be/SX_Xea4R4mM?si=4TFoWxsGVruWKSdT

A significant portion of the association between Long COVID and increased financial hardship (6%–20%) is mediated by loss of employment or reduced work hours. N= 271, 076 BRFSS data survey (2022)

krcoombs — 2024-12-06 22:18:18 UTC

https://onlinelibrary.wiley.com/doi/10.1111/1475-6773.14413

Each issue contains the latest information on Social Security Admin (SSA) programs, services, and initiatives.

krcoombs — 2024-12-06 22:32:48 UTC

https://www.ssa.gov/news/mip/

It is in everyone’s interest that our postsecondary institutions start working now to limit the harms of post-COVID condition on students.

krcoombs — 2024-12-08 19:07:57 UTC

https://theconversation.com/we-can-and-must-do-more-to-protect-students-in-higher-education-from-the-risks-of-post-covid-condition-244244

The transformative potential of monoclonal antibody treatments for viral persistence.

krcoombs — 2024-12-08 23:55:21 UTC

https://youtu.be/Nihzqamt5xY?si=XD2TKp81ziqtX317

Get any-time access to our growing collection of documents, lectures, and laboratory exercises. RECOVER training for all cohorts, Guides to analyzing RECOVER REDCap Data, Exercises and workshops on coding with RECOVER Data

krcoombs — 2024-12-09 23:31:28 UTC

https://www.recover-nbr.org/courses

In 2024, we saw Long COVID clinical trial results, a 2024 NASEM definition, and many events centered on Long COVID and associated conditions. In the upcoming year, we will launch the Secretary’s Advisory Committee on Long COVID, continue to educate and raise awareness, and keep the focus on helping patients.

krcoombs — 2024-12-10 14:38:25 UTC

https://view.connect.hhs.gov/?qs=48f1f057335df0e2f8b189aff76fbe5c37764abc331fd39ac3313ea405d0bc2acb5da6ccc774748fe976b66acc46d4283f573b6c31989a2e82fc0d7f4d5f9933a217c07bf875e5143d8f77432fae81de

Now, young people meet online to sing simple, fun songs together, practice breathing exercises, and support each other in an understanding environment. Together, they wrote a powerful song that expresses their experiences and advocates for young people living with long COVID.

krcoombs — 2024-12-11 17:32:48 UTC

https://www.who.int/europe/news-room/10-12-2024-the-long-covid-kids-choir--giving-voice-to-young-people-s-experiences-of-a-life-changing-illness

The discussion highlights the importance of a patient-centered approach in rehabilitation and the need for a multidisciplinary team to address the various symptoms and challenges faced by long COVID patients.

krcoombs — 2024-12-11 21:17:02 UTC

https://podcasts.apple.com/us/podcast/35-the-autonomic-nervous-system-in-long-covid-with-dr/id1716072073?i=1000679968996

NIH recently received approval to reallocate $147 million to support the ongoing efforts of the Researching COVID-19 to Enhance Recovery (RECOVER) Initiative. This allocation brings the total new funding to $662 million.

krcoombs — 2024-12-13 23:19:52 UTC

https://www.nih.gov/about-nih/who-we-are/nih-director/statements/nih-adds-funds-long-covid-19-research-advances-work-new-clinical-trials

They discussed how this research informs understanding of persistent infection and how it may explain some Long COVID symptoms.

krcoombs — 2024-12-14 13:00:51 UTC

https://www.youtube.com/watch?v=B1sFSW94JZg

Dianna Cowern’s livestream event wasn’t just about raising funds; it became a lifeline of hope for others battling ME/CFS and Long COVID. The event highlighted the urgent need for research funding.

krcoombs — 2024-12-15 21:44:14 UTC

https://www.omf.ngo/physics-girl-living-with-long-covid/

"It's very difficult for students who get long Covid. We fall right through the cracks" of the social system, unable to start working, she said. Britt also wants more targeted research into post-infectious conditions like long Covid.

krcoombs — 2024-12-16 16:33:09 UTC

https://www.yahoo.com/news/five-years-pandemic-long-covid-012508527.html?guccounter=1

Respondents reported taking frequent rest breaks, eliminating distractions, making lists, emailing themselves a daily report of completed projects, using visual prompts on whiteboards or talking themselves through tasks. N=21 participants in 2022.

krcoombs — 2024-12-16 21:06:06 UTC

Long COVID’s effects on employment: financial distress, fear of judgment

How do updated data from nearly 4000 additional participants and expanded symptom questionnaires inform the prior research classification for long COVID (LC) or post–COVID-19 condition?

krcoombs — 2024-12-18 23:46:09 UTC

https://jamanetwork.com/journals/jama/article-abstract/2828329

Katie talks about her health journey and how lifestyle changes helped her regain her strength. Andrea shares the importance of building a strong foundation through simple, daily exercises to support the mind and the body. Dr. Klimas gives her expertise on how personalized approaches can help rewire the brain and body toward healing.

krcoombs — 2024-12-19 21:16:53 UTC

https://www.youtube.com/watch?v=PBMUE-HQ05U

In this webinar, Emily Taylor and Dr. Jason will discuss their findings and what they signal for the future of research on ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs).

krcoombs — 2024-12-19 21:55:27 UTC

https://www.youtube.com/watch?v=bm3pPfQ4Vqk

Join Drs. Putrino, Proal, and Baxter from the Cohen Center for Recovery from Complex Chronic Illness to talk about the relationship between mitochondrial dysfunction and chronic illness.

krcoombs — 2024-12-21 02:31:17 UTC

https://www.youtube.com/live/U7TCGX7V9Eo?si=MkN2WjrzuCzibNbF

But according to Northwestern Medicine researchers, who published a study in the Annals of Neurology, an official journal of the American Neurological Association, younger adults get worse long COVID symptoms.

krcoombs — 2024-12-21 17:39:03 UTC

https://www.nm.org/healthbeat/medical-advances/science-and-research/long-covid-19-hits-young-adults-harder

With just 9-10% of individuals recovering after two years, long COVID emerges as a disease with profound health and societal consequences. Beyond the physical toll, he critiques societal and systemic failures to address the issue, including the missed opportunity to implement protective infrastructure like HEPA filters and hybrid work protocols.

krcoombs — 2024-12-22 15:47:34 UTC

https://youtu.be/4XWHLUu6e38?si=pbtr0l7G9ux0cnZE

The CDC will update the cumulative estimates every week. For many years, the CDC has published similar estimates for flu.

krcoombs — 2024-12-23 14:53:29 UTC

https://www.cdc.gov/ncird/whats-new/cdc-releases-new-in-season-estimates-for-covid-19-and-rsv.html

This season, we are inspired by the courage and resilience of the patient community—and fueled by the hope that unites us all.

krcoombs — 2024-12-23 19:39:35 UTC

https://www.omf.ngo/peaceful-holidays/

Remember all the other ME/CFS and Long Covid patients out there, feeling the exact same profound longing and loneliness that you do. We will all get through this together.

krcoombs — 2024-12-25 01:32:31 UTC

https://www.whitneydafoe.com/mecfs/?post=chronicallly-sick-holidays

Dr. Gemma Carey, an Australian academic, author, Long COVID advocate, and disability rights activist from Canberra, passed away on November 24, 2024, at the age of 43. Her work in public health, disability rights, and social justice had a profound impact on the communities she served, particularly those marginalized by conventional healthcare systems.

krcoombs — 2024-12-27 14:02:10 UTC

https://thesicktimes.org/2024/12/23/dr-gemma-carey-australian-public-health-scholar-and-long-covid-advocate-dies-at-43/

Sars CoV-2 has been with us for five years. In the first of a 2-part special, Science in Action asks how well was science prepared for it? And are we any better prepared for the next one?

krcoombs — 2024-12-27 21:10:34 UTC

https://www.bbc.co.uk/sounds/play/w3ct5vdx

SARS-CoV-2 triggers bone inflammation and breakdown, especially in individuals with autoimmune diseases.

krcoombs — 2024-12-31 18:10:08 UTC

https://www.lerner.ccf.org/news/article/?title=New+research+unravels+connection+between+rheumatoid+arthritis%2C+long+COVID+and+bone+pain+to+bone+loss+&id=fc2303a1a63712773336ff539b5dee72bd8e25b4

Reasons behind the stunning increase vary, but many seem connected to the COVID-19 pandemic

krcoombs — 2025-01-04 17:17:22 UTC

https://insurancenewsnet.com/innarticle/disability-claims-skyrocket-raising-new-puzzle-alongside-excess-mortality

There was a highly significant association between symptoms (ie, loss of smell, shortness of breath, and loss of taste) and mild illness in the prolonged and persistent groups during the post-infection phase. N= 426 Saudi Arabian college students

krcoombs — 2025-01-05 19:01:11 UTC

https://www.cidrap.umn.edu/covid-19/data-show-7-rate-long-covid-college-students

Wastewater shows HIGH levels of COVID across the United States, with Flu and RSV at more MODERATE levels in wastewater, but all are increasing rapidly now as people are together. indoors.

krcoombs — 2025-01-06 00:50:26 UTC

https://drruth.substack.com/p/covid-h5n1-norovirus-and-more-1525?utm_source=share&utm=

Today I am excited to announce the U.S. Department of Health and Human Services will induct in the first wave of members to the Secretary’s Advisory Committee on Long COVID.

krcoombs — 2025-01-08 19:17:51 UTC

https://view.connect.hhs.gov/?qs=535e423cb25ad02bba18173136481a1a5c76bfebeef379fe5d073c869d502e9e9455486b3657418e6bb98e62faa48f3b4d16b0905d4946f7c49d57222b7ae496e92ed71debd8f7858b4232ea03173ab1

Pandemic Roundup: January 9, 2025. Need help navigating different risk levels in relationships? The Covid Safety Handbook is here.

krcoombs — 2025-01-09 16:52:51 UTC

https://www.patreon.com/posts/119618779?utm_campaign=postshare_fan&utm

https://linktr.ee/covidbook

The authors call for increased attention and collaboration among health professionals to improve health messaging, fill in gaps in the public’s understanding of long COVID and study the ongoing impacts of the virus.

krcoombs — 2025-01-11 00:24:16 UTC

https://socialwork.buffalo.edu/news-events/latest-news.host.html/content/shared/socialwork/home/news/2024/exploring-impact-long-covid.detail.html

I am pleased to share the registrations and slides of the first International Meeting on Long Covid in Children I was proud to organize in Rome

krcoombs — 2025-01-13 14:28:11 UTC

https://youtu.be/V6lld9hrlEw?si=F0ubn0a5IgpD9Hr5

CDC Engages in Discussions on How to Protect High-Risk Communities with Pan End It!,Mask Together America, and Long COVID Justice

krcoombs — 2025-01-13 14:58:51 UTC

https://masktogetheramerica.org/press-release.html?fbclid=IwY2xjawHyCONleHRuA2FlbQIxMAABHQmjW_ZBA6yW0KnLhapc2ZszBdH_3vVLkzh4BT6D0kHbILtbHYgwuu_a-g_aem_lDlEryZBvHAyvYYUUxgQrQ#press-release

NIH RECOVER OMICS Task Force advocates for an integrated “big data and systems biology” approach, using multi-omics to analyze biospecimens from the largest possible sample sizes in the RECOVER adult and pediatric cohorts, as opposed to single analyte assays or individual omics in multiple separate studies.

krcoombs — 2025-01-13 17:19:41 UTC

https://www.frontiersin.org/journals/systems-biology/articles/10.3389/fsysb.2024.1422384/full

An in-depth interview with immunologist Ziyad Al-Aly on the prevalence of Long Covid, simple but ignored prevention mechanisms, clinical trials and what he thinks is needed in the long run to better cope with this pandemic. (48 mins.)

krcoombs — 2025-01-14 02:11:27 UTC

https://youtu.be/jiCqxz1yfRY

Slides made for health care providers or anyone interested in learning more about COVID.

krcoombs — 2025-01-16 15:05:41 UTC

tinyurl.com/C4MFTslides

While the physical and psychological symptoms can be brutally debilitating, one of the hardest things about dealing with long COVID—including in the workplace—is the lack of understanding and compassion.

krcoombs — 2025-01-16 17:28:46 UTC

Long COVID-19 at work: How to be a supportive colleague - Fast Company

This reveals that there is spill over of previously circulating variants of concern (VOC) to household pets from their infected owners.

krcoombs — 2025-01-16 18:11:36 UTC

https://www.sciencedirect.com/science/article/pii/S205229752400252X

Covid is airborne: it is in the exhaled breath of infected people. Vaccines and treatments are your last lines of defense. Post-infection immunity shortened to 28 days. Long Covid usually comes from reinfections, most often “mild” infections. There is no limit to how many times you can catch Covid-19.

krcoombs — 2025-01-16 18:29:00 UTC

https://www.patreon.com/posts/86871700

Managing long-COVID cases could cost US employers $1.99 billion to $6.49 billion annually, according to a new model published yesterday in the Journal of Infectious Diseases. The model estimates current and future financial burdens related to long COVID, which affects an estimated 44.7 million to 48.0 million Americans.

krcoombs — 2025-01-24 03:28:56 UTC

https://www.cidrap.umn.edu/covid-19/analysis-shows-significant-financial-burden-long-covid-us

First study showing Pediatric Long COVID has a distinct blood protein signature marked by increased ongoing general and endothelial inflammation.

krcoombs — 2025-01-24 19:17:29 UTC

https://www.nature.com/articles/s41390-025-03837-0

Video: “Women actually have a much better immune response when they initially get the virus so they actually can ward off the virus quicker than men. However, by revving up that immune system, the virus tends to be in the body longer, and it can actually cause an autoimmune-like condition”.

krcoombs — 2025-01-26 15:58:06 UTC

https://youtu.be/cPtlrMzFOAI

RECOVER Researchers actively shared their discoveries through scientific publications and presentations, while media coverage raised public awareness of long COVID.

krcoombs — 2025-01-29 01:10:55 UTC

https://youtu.be/fNwJ6s2Chu8

This page is mainly for Family Physicians (General Practitioners/GPs) practicing medicine in the community setting as a guide to help them to diagnose Long COVID in an individual. We encourage Long Haulers to read and try to understand this too.

krcoombs — 2025-01-29 01:17:20 UTC

https://longcovidtheanswers.com/managing-persistent-long-covid-symptoms/?amp=1

Kids’ long COVID involves persistent symptoms like fatigue, headaches, abdominal pain, and mood changes weeks or months after initial infection. It can impact daily activities and school performance.

krcoombs — 2025-01-29 01:17:40 UTC

https://longcovidtheanswers.com/category/kids-pediatrics/

But there’s good reason to fear that the ACA is at risk, based on things that Trump, Elon Musk, Vice President-elect JD Vance, Speaker of the House Mike Johnson, and other Republican leaders have said – and the fact that Musk and Vivek Ramaswamy are planning to slash government spending, in part by targeting safety net programs.

krcoombs — 2025-01-30 02:33:31 UTC

https://thesicktimes.org/2025/01/27/as-someone-with-long-covid-im-terrified-of-what-could-happen-to-the-affordable-care-act/

“This is an opportunity for public-facing persons to provide collective advice to the Secretary of Health for long COVID. It will be great to offer my perspective as a physician-researcher who has been caring for persons with long COVID and other infection-associated chronic conditions.”

krcoombs — 2025-01-30 20:32:07 UTC

https://sanantonioreport.org/san-antonio-doctor-appointed-to-federal-advisory-committee-on-long-covid/

"I want to talk to you all about something pretty personal to me. Who has heard of long COVID,... how about Lyme disease? What do they have in common?... Both are autoimmune conditions".

krcoombs — 2025-01-30 20:39:22 UTC

https://youtu.be/ZvjYhEvfnRk

In a recent interview with NeurologyLive®, Igor Koralnik, MD, emphasized the importance of identifying specific biomarkers to better understand the metabolic and mitochondrial changes underlying Long COVID symptoms.

krcoombs — 2025-01-30 21:35:42 UTC

https://www.neurologylive.com/view/neurologic-impacts-long-covid-autoimmune-syndrome-igor-koralnik

Learn about how routine lab tests may not detect Long COVID. Discover why this research is important for future studies and how it can help us better understand and treat Long COVID.

krcoombs — 2025-01-30 22:04:57 UTC

https://youtu.be/GJjx5VCRS_I

Researchers have written in a new study in the journal Menopause that higher levels of leukocytes, a form of white blood cells, are associated with more severe symptoms of long COVID among older women.

krcoombs — 2025-01-31 20:56:59 UTC

https://www.geo.tv/latest/588230-severity-of-long-covid-depends-on-white-blood-cell-count-study

We created a SPLASH guide, (which is also relevant for ME and other chronic illnesses) which contains a few handy pointers that can make a difference. Let’s explore!

krcoombs — 2025-02-05 13:14:30 UTC

https://longcovidadvocacy.substack.com/p/how-to-help-someone-with-long-covid?utm_source=share

Dr. Natelson’s Brain Study will examine O2 uptake, glucose utilization, and sagittal sinus drainage to determine whether energy failure. His second study is the first to measure the effects of exercise on blood volume, overbreathing patterns, hyperventilation, and CO₂ levels in these conditions.

krcoombs — 2025-02-06 02:37:11 UTC

https://www.healthrising.org/blog/2025/02/05/natelson-brain-blood-volume-chronic-fatigue-long-covid/

Breathing re-education in health and recovery, breathing techniques, their impact on the autonomic nervous system, and how they can support recovery from chronic illnesses.

krcoombs — 2025-02-07 02:01:54 UTC

https://www.youtube.com/live/D1extSPaO18?si=elSIhmRjt65T_a1a

Today, invisible illnesses like long COVID and chronic fatigue are the new frontline in an age-old information war. But in this fight, moms are set up to fail.

krcoombs — 2025-02-07 18:13:00 UTC

https://www.psychologytoday.com/us/blog/risking-it/202501/im-the-mom-but-no-one-listened-to-me?fbclid=IwY2xjawITLFtleHRuA2FlbQIxMQABHTVrivVaBWGY01e9iuFvfKB4ie2UvQ_pZTXhF8v0HbPo9thvTET7A7BbWQ_aem_reE3JWV9c3dbRyZh9UOroA&sfnsn=mo

This study found that COVID-19 infection is linked to both subjective and prolonged objective cognitive impairment, particularly in executive function, among some undergraduate students, with distinct anterior prefrontal hemodynamic responses observed in those with past infections, especially those experiencing brain fog. N=94 Undergraduates

krcoombs — 2025-02-10 13:55:42 UTC

https://www.sciencedirect.com/science/article/pii/S0889159124007311

The Network of Biostatisticians for RECOVER (NBR) aims to establish a nationwide, distributed model for biostatistical analysis of data from RECOVER observational cohorts, offering essential tools, methodologies, and instructions for accessing relevant datasets.

krcoombs — 2025-02-11 02:19:16 UTC

https://www.recover-nbr.org/?utm_source=ACC+Communications&utm_campaign=c3a227e4c4-RECOVER_REPORT_JANUARY_2025&utm_medium=email&utm_term=0_-d667294d06-602921403

In a new report, global experts outline key considerations to address persistent SARS-CoV-2; provide a roadmap to test critical new long COVID therapies.

krcoombs — 2025-02-12 03:44:43 UTC

https://polybio.org/cutting-edge-recommendations-provide-treatment-path-for-millions-of-long-covid-patients/?fbclid=IwY2xjawIY-HVleHRuA2FlbQIxMQABHVMRCh1x8z4oR3nDq-kCgfTe3uXhhlcLvib0eO4H0L6MZPmLz3Twk9NnEg_aem_YpNc9Kic4zUxblmxxE6mlg

During the Omicron era, protection was robust only for those recently infected, declining rapidly over time and diminishing within a year. N = 1,781,195

krcoombs — 2025-02-12 23:54:34 UTC

https://www.nature.com/articles/s41586-024-08511-9#Fig1

At the Cohen Center for Recovery from Complex Chronic Illness , we are dedicated to treating, studying, and advancing care for infection-associated chronic conditions through evidence-based medicine and innovative clinical research.

krcoombs — 2025-02-13 01:45:47 UTC

https://icahn.mssm.edu/research/cohen

https://icahn.mssm.edu/research/cohen/research

Preventing this destruction will require at least two actions. Americans who value the spirit of discovery — need to issue a strong outcry. And legislators must exercise their constitutional responsibilities to oppose unqualified candidates for important federal positions.

krcoombs — 2025-02-15 20:03:38 UTC

https://www.nytimes.com/2025/02/14/opinion/trump-public-health-funding-nih.html

In this video, the first of two, I talk with Professor Klaus Wirth about his latest research into mitochondrial dysfunction in ME/CFS and Long Covid.

krcoombs — 2025-02-15 20:10:26 UTC

https://youtu.be/9gwMw69XCP0

"That rebuilding doesn’t happen in all relationships. With stressors like child-rearing or chronic illness, dams break, partly because the new limitations require us to change our behaviors. The other party can’t always accommodate the changes".

krcoombs — 2025-02-15 20:12:52 UTC

https://longcovidmd.substack.com/p/long-covid-drains-energy-and-relationships?utm_source=share&utm_medium

A new Pew Research Center poll shows 72% of Americans said the pandemic did more to divide the country than bring it together, with 75% saying COVID-19 took a toll on their own lives. N=9593

krcoombs — 2025-02-16 22:24:07 UTC

https://www.cidrap.umn.edu/five-years-later-americans-say-pandemic-drove-them-apart#:~:text=A%20new%20Pew%20Research%20Center,October%202024%20with%209%2C593%20respondents.

"New research finds so many Americans died from the virus that the nation’s Social Security trust fund will see a net increase of hundreds of billions of dollars due to retirement benefits that will not be paid out".

krcoombs — 2025-02-20 03:51:14 UTC

https://archive.md/2025.02.19-201043/https://fortune.com/2025/02/19/americans-died-covid-social-security/

"I constantly ask myself what I have done to cause that discomfort, but the more I explore that question, the more I realize that, in being unable to pretend wellness, the discomfort is me".

krcoombs — 2025-02-20 18:33:43 UTC

https://www.disabilitydebrief.org/debrief/forgotten/

Saturday, March 15th, is International Long Covid Awareness Day! Each year, we come together on this day to represent the millions of people suffering from Long Covid.

krcoombs — 2025-02-20 21:54:49 UTC

https://www.longcovidawareness.life/

You may feel fatigued, struggle with brain fog, experience shortness of breath, or notice a rapid heart rate after minimal exertion. If you’ve asked yourself, Could this be Long COVID?—you’re not alone.

krcoombs — 2025-02-21 19:51:03 UTC

https://whn.global/i-feel-lousy-could-this-be-long-covid/

The executive order follows the removal of important Long COVID information and data from federal websites since the Trump Administration took office this year.

krcoombs — 2025-02-21 20:11:31 UTC

https://thesicktimes.org/2025/02/21/trump-commands-hhs-to-terminate-advisory-committee-on-long-covid/

It describes how mitochondria work and why their dysfunction might be the key to understanding Long COVID and ME/CFS - based on Professors Scheibenbogen’s and Wirth’s most recent paper.

krcoombs — 2025-02-21 20:19:05 UTC

https://www.youtube.com/watch?v=vU91aBLyMMQ

Latest changes in Public Health, Adult (non-flu) Vaccines, Influenza Vaccines, and the Long COVID Advisory Committee

krcoombs — 2025-02-21 22:26:09 UTC

https://www.cidrap.umn.edu/public-health/acip-postponement-shelving-cdc-vaccine-campaigns-stir-fears

By tracking participants at various stages before and after a Covid infection, the researchers were able to pinpoint sex-based differences at multiple points in the recovery process. N=12 276

krcoombs — 2025-02-21 23:36:36 UTC

https://katiecouric.com/health/long-covid-study-women/

Unlike regular tiredness, ME/CFS symptoms include post-exertional malaise (PEM), where even minor physical or mental activity can cause a severe crash that may not appear until 24 hours later. The condition is often triggered by infections.

krcoombs — 2025-02-23 15:17:04 UTC

https://youtu.be/wxSwYUennBA

Long COVID patients are grateful to bipartisan Congressional leaders Senators [Todd] Young and [Tim] Kaine, HELP Chair [Bill] Cassidy and Ranking Member [Bernie] Sanders for responding to our community’s urgent call to preserve these critical NIH RECOVER grants.

krcoombs — 2025-02-25 01:11:22 UTC

https://thesicktimes.org/2025/03/28/update-recover-long-covid-pathobiology-grants-restored/

“Most of us are in this cycle, where we push ourselves to work and live our lives, only to crash and experience an increase in both the number and severity of symptoms,” McCorkell explained. This episodic nature, combined with the fact that many symptoms are not outwardly visible, makes it difficult for those affected to navigate.

krcoombs — 2025-03-01 13:13:11 UTC

https://news.aai.org/2025/02/27/long-covid-an-often-invisible-disability/

https://www.aai.org/Public-Affairs/AAI-Congressional-Briefing

So the circle closes in a bitter way, and at the end of January 2025, Faraz is back where he was in autumn 2022 - but this time, there is, unfortunately, no second chance for treatment for him. So Faraz's only option is to give up and say goodbye - a final, difficult path surrounded by his loved ones, which he walked admirably bravely and composedly

krcoombs — 2025-03-01 22:51:33 UTC

https://www.dmz-news.eu/2025/02/27/zum-tod-von-faraz-fallahi-1982-2025/

DOCTORS ARE LOOKING INTO WHETHER THE DIFFERENT LEVELS OF HORMONES COULD IMPACT LONG COVID.

krcoombs — 2025-03-07 03:41:32 UTC

https://www.youtube.com/watch?v=1Ax-OnBUN5c

CBS19 News segment on Millions in US with Long COVID.

krcoombs — 2025-03-07 04:03:35 UTC

[Video] Study shows millions suffered from long-COVID Source: CBS19 https://share.newsbreak.com/bx2fyz3b

I began to find other people experiencing the same thing, on social media and in early op-eds, rewriting the narrative that most recover in “two weeks.” Here we are five years later, still sick.

krcoombs — 2025-03-11 01:14:56 UTC

https://thesicktimes.org/2025/03/07/half-a-decade-of-long-covid/

krcoombs — 2025-03-11 20:17:57 UTC

[Video] Young adults addled with these issues may have long COVID, cardiologist says Source: 13 ON YOUR SIDE https://share.newsbreak.com/c09bxixe

People with Long COVID are incredibly sick yet continue to face widespread neglect from the medical system. People are losing their ability to earn an income and support themselves; they're losing connection to their friends, partners, and families.

krcoombs — 2025-03-15 00:36:45 UTC

https://www.berlinbuyersclub.com/5-years-long-covid

Today, on Long COVID Awareness Day, we demand recognition, action, and justice. We refuse to let this crisis be erased.

krcoombs — 2025-03-15 12:48:49 UTC

https://longhauler-advocacy.org/so/70PLv7CIW?languageTag=en&cid=b7021d74-37a4-47e2-a07f-8f1e4e48b7ef

13 min video: ✅ To help peers better understand Long Covid ✅ To reduce stigma, bullying, and disbelief ✅ To provide young people with a tool they can use to advocate for themselves.

krcoombs — 2025-03-15 12:51:23 UTC

https://youtu.be/e0U7K54RiSg

20 million Americans have been diagnosed with Long COVID in the US, and around 400 million individuals globally. Black and Hispanic Americans appear to experience more health problems related to Long COVID than white people, but are not as likely to be diagnosed with the condition.

krcoombs — 2025-03-15 13:41:37 UTC

https://mailchi.mp/meaction/today-is-long-covid-awareness-day?e=b94c30babe

As the Trump administration changes begin to take shape in the U.S., we must keep pushing for Long COVID treatments as well as for COVID-19 preventions, care, funding, and social assistance.

krcoombs — 2025-03-15 13:59:49 UTC

https://thesicktimes.org/2025/03/14/our-community-came-together-to-start-international-long-covid-awareness-day-in-2023-heres-how-you-can-get-involved-this-year/

Remembering what COVID is and the damage it causes is crucial for anyone organizing around or working towards disability justice, racial justice, LGBTQ+ justice, migrant justice, and liberation.

krcoombs — 2025-03-15 14:26:08 UTC

https://forgeorganizing.org/article/reflecting-on-covid-year-5/

In our conversation, Dr Storm explains why nursing homes are so vulnerable to infection, how to tell if a long-term care resident has long COVID, and ways to protect this demographic from COVID-19 in the first place.

krcoombs — 2025-03-15 15:06:03 UTC

https://longcovidmd.substack.com/p/the-overlooked-crisis-of-long-covid?utm_source=share&utm

Long COVID is a global public health crisis. Over 400 million people worldwide have been impacted by Long COVID. Long COVID is common. As of fall 2024, at least 1 in 19 US adults are currently living with Long COVID, similar to the rate of diabetes.

krcoombs — 2025-03-15 18:49:12 UTC

https://patientresearchcovid19.com/2025-long-covid-fact-sheet/

UK: New newsletter specifically made for children and young adults with Long Covid

krcoombs — 2025-03-15 21:13:18 UTC

https://longcovidkids.org/so/29PMQhFdd?fbclid=IwY2xjawJCzKNleHRuA2FlbQIxMQABHTVznbNlYOMrodPyiGI_hto3c1hs9FANNFd_C2J3W-VIvDr3e3T7vuSF3A_aem_2nB6o8CZ4iUZ_OdA7FFXIQ

Living with any chronic health condition can be a lonely and isolating existence; but it’s especially alienating to live with one that reminds people of a pandemic that they’d rather forget.

krcoombs — 2025-03-16 02:58:10 UTC

https://www.rollingstone.com/culture/culture-features/long-covid-five-years-1235296375/

Whether raising awareness about the disease in public or from their homes, people with Long COVID and their allies have raised their voices to demand recognition, research, treatments, support, and prevention of COVID-19 during the ongoing pandemic, as many in the community observe half a decade of Long COVID.

krcoombs — 2025-03-16 03:02:38 UTC

https://thesicktimes.org/2025/03/15/international-demonstrations-ignite-for-long-covid-awareness-day/

This day serves as a beacon in our collective efforts to raise awareness and bolster support for those living with persistent symptoms following COVID-19 infection.

krcoombs — 2025-03-16 18:16:52 UTC

https://www.omf.ngo/longcovid-awareness-day/

This movement is about more than just survival—it’s about reclaiming our futures. It’s about demanding that we be seen, that we be counted, that we be valued. We exist. We matter. We will not be erased.

krcoombs — 2025-03-16 18:31:37 UTC

https://www.youtube.com/watch?v=Ai5VXVwf42o

We work towards research justice, community-accountable data, and truly equitable policy based on considerations of race and ethnicity, class, age, immigration status, gender and gender identity, sexuality, religion/spirituality, culture, family structure, incarceration, housing status, disability, and co-morbidities.

krcoombs — 2025-03-17 00:40:24 UTC

https://autisticadvocacy.org/2025/03/long-covid-justice-creating-community-together-award-remarks/

This video series delivers information to healthcare professionals utilizing short didactics and case-based learning to enhance their ability to manage patients with long COVID, ME/CFS, fibromyalgia, and related comorbid conditions.

krcoombs — 2025-03-19 21:11:48 UTC

https://www.youtube.com/playlist?app=desktop&list=PL-OZ_5Cqdc32sFSGZXx1AMMCaxS8zRch9

In this talk, Dr David Joffe will provide an overview of the biological basis of Long COVID, while Dr David Tuller will examine the basis of psycho-behavioural therapy focusing on the PACE trial and a major Long COVID trial.

krcoombs — 2025-03-21 20:45:17 UTC

https://www.youtube.com/watch?v=V9f_kjlz6Ho

In general, adult populations of mixed disease severity, vaccination offers some degree of protection against post-COVID conditions (PCC) onset, aligning with findings from previous reviews into this area of research.

krcoombs — 2025-03-25 21:25:42 UTC

https://www.cidrap.umn.edu/covid-19/vaccination-cuts-risk-long-covid-27-review-suggests

"HHS is prioritizing funding projects that will deliver on President Trump’s mandate to address our chronic disease epidemic and Make America Healthy Again."

krcoombs — 2025-03-26 00:22:29 UTC

https://www.nbcnews.com/health/health-news/cdc-pulling-back-11b-covid-funding-sent-health-departments-us-rcna198006

A total of 39.8% of adults and 15.9% of children still had symptoms at 3 months, meeting the criteria for long COVID. N=342

krcoombs — 2025-03-26 00:45:43 UTC

https://www.cidrap.umn.edu/covid-19/covid-symptoms-prolonged-adults-kids-living-arizona-tribal-land-data-suggest

A new study from researchers at King's College London suggests that those from disadvantaged backgrounds, including lower-income households, are more likely to report persistent COVID-19 symptoms, or long COVID. N=3882

krcoombs — 2025-03-26 02:56:41 UTC

https://www.cidrap.umn.edu/covid-19/study-links-social-inequalities-long-covid

Dr. Grace McComsey and Dr. Kristine Erlandson discussed how biomarkers – signs of disease that can be observed and measured – may provide information that will improve researchers’ ability to understand, diagnose, prevent, and treat Long COVID.

krcoombs — 2025-03-26 18:07:11 UTC

https://recovercovid.org/r3-seminar-series/characterization-pasc-and-investigation-biomarkers-insights-recover-adult-cohort

In her forthcoming memoir The Lost Voice (HarperOne), Morgan chronicles how the disease left her voice impaired. “The top half of my range became inaccessible,” she said, “and I began to feel like a stranger in my own body as well.”

krcoombs — 2025-03-27 01:01:36 UTC

https://www.wbez.org/books/2025/03/20/greta-morgan-long-covid-lost-voice-memoir-vampire-weekend

The plan combines personnel cuts, centralization of functions, and consolidation of HHS divisions.

krcoombs — 2025-03-27 19:16:51 UTC

https://www.hhs.gov/about/news/hhs-restructuring-doge-fact-sheet.html

A grassroots, patient-led 501(c)(3) focused on #LongCOVID Awareness & Education list of actions, guidance and campaigns.

krcoombs — 2025-03-27 19:21:35 UTC

https://linktr.ee/c19lap

Dr. Melanie Hoppers discusses the impact of Long COVID on children and adolescents, covering symptoms like fatigue, cognitive dysfunction, and gastrointestinal issues. She highlights how Long COVID affects multiple organ systems and overlaps with conditions like ME/CFS, orthostatic intolerance, and mast cell activation syndrome.

krcoombs — 2025-03-28 11:11:32 UTC

https://www.youtube.com/watch?v=q-JEf1c4HFY

Together, Dr Kane and Dr Proal discuss research about the persistence of the virus in the body, the possible impact of co-infections such as Lyme disease and Bartonella, and any emerging treatments being developed through cutting-edge scientific collaboration.

krcoombs — 2025-03-28 11:14:23 UTC

https://www.youtube.com/live/O94nfb6Fpwg?si=pFpU1zwwIGj9GIf4

Key mechanisms contributing to Cognitive Impairment include persistent neuroinflammation, cerebrovascular complications, direct neuronal injury, activation of the kynurenine pathway, and psychological distress.

krcoombs — 2025-03-31 12:09:33 UTC

https://onlinelibrary.wiley.com/doi/10.1111/cns.70348

Infection with pathogens such as SARS-CoV-2 can disable the host immune response in a manner that allows latent pathogens harbored by a person to reactivate and potentially drive new chronic symptoms.

krcoombs — 2025-04-02 12:48:07 UTC

https://polybio.org/projects/impact-of-tick-borne-vector-borne-infection-on-post-covid-symptoms/

An association of increased rates of diagnosis of various infections in the 12 months following an acute SARS-CoV-2 infection.

krcoombs — 2025-04-03 00:31:44 UTC

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(24)00831-4/abstract

More than 100 public heath leaders yesterday sent a letter to US House and Senate leaders, asking them to stop the Trump administration’s efforts to dismantle the Centers for Disease Control and Prevention (CDC) and undermine the nation’s public health infrastructure.

krcoombs — 2025-04-03 23:13:41 UTC

https://www.cidrap.umn.edu/covid-19/health-leaders-multiple-prior-administrations-sound-alarm-over-cdc-cuts

The ripple effects are vast—gutting HIV prevention, infectious disease research, and vaccine development, while threatening the stability and viability of the workforce that sustains US public health and biomedical research.

krcoombs — 2025-04-04 22:25:58 UTC

https://mailchi.mp/avac/global-health-watch-march21-2106922?e=2b23c325d6

Principles: 1. Remember that social movements drove our field. 2. Do not comply in advance 3. Retain precise language 4. Harness collective power in an explicit and subtle way 5. Acknowledge that each affront to HIV science is connected

krcoombs — 2025-04-05 20:46:41 UTC

https://open.substack.com/pub/thecrankyqueer/p/operating-principles-against-fascism?r=a36iw&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false

Long COVID Fact Sheet & LC Awareness Day, Advocacy Updates, Introducing New PLRC Staff, Three New PLRC Papers, Reinfections Study — Need More Participants!, Thank you to Lisa McCorkell

krcoombs — 2025-04-08 18:21:00 UTC

https://4xde2.r.a.d.sendibm1.com/mk/mr/sh/SMJz09SDriOHTzlYjt3DemnGPdEQ/ydqOBRTX3I2N

The researchers are disappointed that Paxlovid did not provide relief to the participants. However, they are optimistic that the PAX LC Trial is proof that decentralized trials are not only immensely beneficial to the participants but can also be conducted in an efficient and cost-effective way.

krcoombs — 2025-04-09 01:20:50 UTC

https://www.eurekalert.org/news-releases/1079637

Removing disabled people from society who can’t work productively without medication is the point. That’s not a problem for them, that’s a solution.

krcoombs — 2025-04-09 01:25:20 UTC

https://www.thegauntlet.news/p/rfk-jrs-maha-movement-doesnt-want?

Lost wages due to long COVID among working-age survey respondents were estimated at $211 billion in 2022 and $218 billion in 2023.

krcoombs — 2025-04-09 21:07:18 UTC

https://www.cidrap.umn.edu/covid-19/studies-1-7-us-working-age-adults-report-long-covid-heaviest-burden-poor

The virtual program trains health care professionals on how to diagnose and manage long COVID in children.

krcoombs — 2025-04-10 13:55:12 UTC

https://www.wbaltv.com/article/health-kennedy-krieger-diagnose-manage-long-covid-children/64410089

"Unlike bacteria, which have a cell wall to protect them, viruses are just strands of RNA and are usually not this hardy," she said. "The coronavirus evolved to stay alive in the air for quite a long time."

krcoombs — 2025-04-10 21:11:57 UTC

https://www.cidrap.umn.edu/covid-19/using-study-design-past-researchers-again-show-covid-19-airborne

Clinical trials have been attempted with promising medications. However, many have not met their primary therapeutic objectives and have been discontinued.

krcoombs — 2025-04-12 16:42:50 UTC

https://www.idsociety.org/science-speaks-blog/2025/therapeutic-updates-on-long-covid-where-things-stand-5-years-later/#/+/0/publishedDate_na_dt/desc/

Funds will support exploration of SARS-CoV-2’s potential to drive cancer, as well as continued work delineating persistence of the virus in long COVID tissue, including therapies to optimally clear persistent virus.

krcoombs — 2025-04-16 00:35:55 UTC

https://polybio.org/chan-soon-shiong-family-foundation-donation-expands-polybio-long-covid-program/

The latest episode of Long Covid, MD is a podcast share. Hear my story of developing long COVID, and the direction I think healthcare needs to go to effectively care for long COVID patients.

krcoombs — 2025-04-19 17:23:13 UTC

https://longcovidmd.substack.com/p/how-do-we-move-a-mountain-together

Archive section 2/25/25-3/1/24

krcoombs — 2025-04-21 13:59:23 UTC

https://padlet.com/krcoombs/breakout-room/8G57v19nYNBgvdVX-aW0BzoKOZKAqzwl6

Archive from October 2024-June 2023

krcoombs — 2025-04-21 16:23:16 UTC

https://padlet.com/krcoombs/breakout-room/E1Xd49NQVpED2GJr-aW0BzoKOZKAqzwl6

Archive Oct 2024-Aug 2023

krcoombs — 2025-04-21 18:42:37 UTC

https://padlet.com/krcoombs/breakout-room/DKrG4nj6moz741y3-aW0BzoKOZKAqzwl6

The goal of this work is to disseminate essential information about Long COVID and recommendations about definition, diagnosis, treatment, research and social issues to physicians, researchers, and policy makers to address this escalating global health crisis.

krcoombs — 2025-04-21 22:24:46 UTC

https://ann-clinmicrob.biomedcentral.com/articles/10.1186/s12941-025-00793-9

Post-COVID conditions place a heavy burden on millions of people around the world and diminish QOL.

krcoombs — 2025-04-21 22:30:56 UTC

https://www.tandfonline.com/doi/full/10.1080/07370016.2025.2487702

One theory goes like this: we have antibodies against proteins or substances that are released after exertion.

krcoombs — 2025-04-21 22:34:15 UTC

In a second study, a survey conducted in Germany reveals a 23% rate of long COVID among dental professionals, with higher rates in auxiliary personnel than in dentists.

krcoombs — 2025-04-23 21:12:46 UTC

https://www.cidrap.umn.edu/covid-19/studies-detail-high-rates-long-covid-among-healthcare-dental-workers

Archive December 2024- February 2023

krcoombs — 2025-04-24 00:40:36 UTC

https://padlet.com/krcoombs/breakout-room/mWng4l1ebGPJ2zdJ-aW0BzoKOZKAqzwl6

Archive May 2024 - Nov 2022

krcoombs — 2025-04-24 02:15:24 UTC

https://padlet.com/krcoombs/breakout-room/kZDR4LQ6zAJG2l9a-aW0BzoKOZKAqzwl6

Archive Nov 2024-April 2023

krcoombs — 2025-04-24 02:34:23 UTC

https://padlet.com/krcoombs/breakout-room/YQjo4KGpby8r4DwL-aW0BzoKOZKAqzwl6

For people with cranio-cervical instability (CCI), a debilitating condition linked to connective tissue disorders, this surgery can help reduce symptoms.

krcoombs — 2025-04-24 18:46:38 UTC

https://thesicktimes.org/2025/04/22/this-surgeon-fuses-peoples-skulls-to-their-spines-to-treat-a-rare-complication-of-myalgic-encephalomyelitis/

“HHS Secretary Kennedy’s decision to eliminate ACL is unacceptable and will harm millions of Americans who benefit from essential programs like Meals on Wheels.. We are demanding answers about why and how Secretary Kennedy made this harmful decision and will keep up the pressure until it is reversed.”

krcoombs — 2025-04-25 11:52:25 UTC

https://www.motherjones.com/politics/2025/04/rfk-jr-bill-community-living/

Archive: December 2024-January 2023

krcoombs — 2025-04-25 18:01:25 UTC

https://padlet.com/krcoombs/breakout-room/961rqR9XkXg62nND-qg3ezdaqO623XwNP

In this film, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. (Dutch w/subtitles)

krcoombs — 2025-05-02 11:14:40 UTC

https://www.youtube.com/watch?v=J0ywwLIfH_w

Patients are being told at their doctor's offices that long COVID isn't a thing, and they are now saying, "Well, I have ME/CFS because I meet the diagnostic criteria." They know that there isn't a political association with ME/CFS the way that there is with long COVID.

krcoombs — 2025-05-02 19:01:07 UTC

https://www.youtube.com/watch?v=gYFGgprHAdU

Health Rising’s first deep and long-overdue dive into what we know about children, adolescents, and young people with ME/CFS and/or long COVID.

krcoombs — 2025-05-04 17:22:03 UTC

https://www.healthrising.org/blog/2025/05/03/young-people-chronic-fatigue-long-covid/

We're the world's first medical center dedicated to the research and treatment of infection-associated chronic illnesses. Watch to learn from our center directors all about our center.

krcoombs — 2025-05-05 23:06:54 UTC

https://www.youtube.com/live/ActMM5qQMrY?si=Z3rNWYPCMUzebBvd

The committee provided best practices for preventing and controlling health care-associated infections. It shared guidelines on disinfection and sterilization, environmental infection control and hand hygiene in health care settings, among other areas of concern.

krcoombs — 2025-05-07 22:16:33 UTC

https://thehill.com/policy/healthcare/5286736-trump-nixes-cdc-infectious-disease-advisory-committee-report/

The health trajectory of increasingly younger adults has changed dramatically since COVID-19. The hope is to help insurers move beyond claims processing and into proactive, preventive care—particularly for younger people who now find themselves facing chronic illness earlier than any previous generation.

krcoombs — 2025-05-08 16:09:02 UTC

https://insurancenewsnet.com/innarticle/partnership-formed-to-confront-rise-in-illness-premature-death-in-young-americans

Nearly a third of Black people who contracted COVID-19 have experienced long COVID symptoms, one study found. Researchers have found that Black long COVID patients report experiencing implicit bias, microaggressions, and other forms of discrimination when seeking treatment for their symptoms.

krcoombs — 2025-05-09 12:49:26 UTC

https://capitalbnews.org/black-americans-long-covid-trump-cuts/

Bateman Horne Center CLINICAL CARE GUIDE: This guide aims to equip providers with clear, actionable tools to better support their patients’ care journeys and help improve daily function and long-term health outcomes.

krcoombs — 2025-05-09 20:48:40 UTC

https://batemanhornecenter.org/wp-content/uploads/2025/05/Clinical-Care-Guide-First-Edition-2025-1.pdf

A new study in the Journal of Occupational and Environmental Medicine suggests significant work productivity losses in people living with long-COVID symptoms for 2 or more years. N=906

krcoombs — 2025-05-14 02:07:15 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-tied-substantial-loss-work-productivity

Link to study: https://journals.lww.com/joem/abstract/9900/work_productivity_loss_in_people_living_with_long.869.aspx

As many basic tasks in the day require postural changes and standing, a person with PoTS is constantly being put under strain as they navigate simple tasks. Symptoms tend to lessen when a patient is horizontal, but it can sometimes take a long time for symptoms to ease off once flared.

krcoombs — 2025-05-14 12:02:14 UTC

https://www.newsweek.com/managing-pots-tips-living-chronic-illness-affecting-millions-2067205

By bringing together a broad network of scientists, clinicians, and study participants across Washington, Oregon, and California, the consortium can make a larger impact.

krcoombs — 2025-05-15 16:59:28 UTC

https://recovercovid.org/news/collaborating-advance-long-covid-research-recover-researchers-team-across-pacific-northwest

But air pollution alone kills an estimated 8.1 million people yearly, before we even consider airborne infectious diseases like COVID-19, tuberculosis, measles and flu.

krcoombs — 2025-05-17 16:21:43 UTC

https://thetyee.ca/Culture/2025/05/16/Inconvenient-Truth-Air-Borne-Disease-Carl-Zimmer/

This conversation is for anyone who’s ever sat in a clinic room feeling unheard. It’s for clinicians trying to unlearn what they were taught. It’s for patients who’ve had to become experts just to survive.

krcoombs — 2025-05-17 16:36:06 UTC

https://longcovidmd.substack.com/p/ask-the-patient-why-medicine-still

This includes the identification of two biologically distinct ME/CFS subgroups based on cerebrospinal fluid (CSF) markers.

krcoombs — 2025-05-20 22:53:50 UTC

https://polybio.org/polybio-and-weme-supported-study-identifies-two-distinct-me-cfs-subtypes/

They identified a gene variant that increases the risk of long COVID by approximately 60 percent, and their findings suggest that impaired lung function plays a significant role in the development of long COVID.

krcoombs — 2025-05-22 02:16:04 UTC

https://news.ki.se/a-gene-variant-increases-the-risk-of-long-covid

Cases of NB.1.8.1 have also now been reported by health authorities in other states, including Ohio, Rhode Island, and Hawaii, separate from the airport cases.

krcoombs — 2025-05-22 20:40:48 UTC

https://www.cbsnews.com/news/us-reports-cases-new-covid-variant-nb-1-8-1-behind-surge-china/

In a document posted on the FDA website, the agency said COVID-19 vaccines used in the United States starting in fall 2025 should be based on JN.1 lineage strains, preferably the LP.8.1 strain.

krcoombs — 2025-05-23 20:27:54 UTC

https://www.cidrap.umn.edu/covid-19/fda-approves-formula-fall-covid-vaccines

The Australian POTS Foundation: All about Postural Orthostatic Tachycardia Syndrome (POTS)

krcoombs — 2025-05-27 12:28:17 UTC

https://potsfoundation.org.au/living-with-pots/

It is not surprising that Long Covid studies relying on the same paradigm would face similar shortcomings.

krcoombs — 2025-05-27 18:32:47 UTC

https://www.openmindmag.org/articles/going-chronic

On Friday May 16 we held an online Symposium where PolyBio-supported researchers presented updates on their projects. Video recordings of the presentations are below.

krcoombs — 2025-05-27 20:04:24 UTC

https://polybio.org/spring-2025-symposium/

Infants/toddlers (0-2 years) with infection history were more likely to experience trouble sleeping, fussiness, poor appetite, stuffy nose, and cough. Preschool-aged children (3-5 years) were more likely to experience dry cough and daytime tiredness/sleepiness or low energy. (Empirically derived indices for long COVID research were developed from these symptoms)

krcoombs — 2025-05-28 14:26:24 UTC

Characterizing Long COVID Symptoms During Early Childhood | Pediatrics | JAMA Pediatrics | JAMA Network

Caregivers can track their child’s symptoms by noting when symptoms start, how long they last, and their severity. Record if symptoms are constant or come and go, and what might improve or worsen them. Recording daily can help identify patterns and support discussions with your child’s pediatrician.

krcoombs — 2025-05-28 14:27:20 UTC

https://jamanetwork.com/journals/jamapediatrics/fullarticle/2834486

In early childhood, long COVID isn’t well understood. JAMA Pediatrics Editor Lindsay A. Thompson shares what symptoms parents should look for.

krcoombs — 2025-05-28 17:39:48 UTC

https://www.instagram.com/reel/DKMd1ASB4P3/?igsh=eHg2MW4wa3IyYTY5

JAMA Network InstaGram video post

About 15% of kids had long COVID. Overall, among children who had been previously infected with COVID-19, 40 of 278 infants 2 years and under (14%) and 61 of 399 children ages 3 to 5 years (15%) had persistent symptoms that could be likely classified as long COVID. N=1,011

krcoombs — 2025-05-28 20:48:26 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-symptoms-young-kids-can-vary-age

The Omics Task Force made recommendations on how RECOVER researchers can combine multi-omics data with the deep clinical and demographic data from RECOVER, allowing researchers to create the most complete picture of how Long COVID affects people.

krcoombs — 2025-05-29 16:20:50 UTC

https://recovercovid.org/news/task-force-makes-recommendations-studying-biological-systems-part-long-covid-research

"It was great that we had these two large databases where we could do this and show important similarities between the observational outcomes and the randomized clinical trial outcomes for metformin in preventing Long COVID". R3 Seminar (60 mins).

krcoombs — 2025-05-29 16:21:36 UTC

https://www.youtube.com/watch?v=olYFCLW8h3w

R3 seminar= RECOVER Research Review

We're sharing knowledge, learnings and insights from across the University of California academic health system to help educate, equip and empower health professionals in the battle against the very real impact of Long COVID.

krcoombs — 2025-05-29 16:22:12 UTC

https://health.universityofcalifornia.edu/long-covid-education

Patient and Clinician Resources for the St. Louis / Midwest Region

krcoombs — 2025-05-29 16:22:34 UTC

https://stlouisihn.org/our-work/clinical-community-integration/long-covid-care/

Resources from The Dysautonomia Project Book

krcoombs — 2025-05-30 02:17:06 UTC

https://thedysautonomiaproject.org/resources/

About Coat hanger pain:

https://thedysautonomiaproject.org/coat-hanger-phenomenon-the-pretzel-leg-sign/

What is dysautonomia: https://thedysautonomiaproject.org/dysautonomia/

As ob-gyns who treat patients every day, we have seen firsthand how dangerous COVID-19 infection can be during pregnancy and for newborns who depend on maternal antibodies from the vaccine for protection.

krcoombs — 2025-05-31 03:47:42 UTC

https://www.acog.org/news/news-releases/2025/05/acog-statement-on-hhs-recommendations-regarding-the-covid-vaccine-during-pregnancy

If a doctor with her background couldn’t get believed—what chance do ordinary patients have? 37 min podcast

krcoombs — 2025-05-31 20:36:29 UTC

https://outrageoverload.substack.com/p/we-havent-healed-from-the-pandemicone

In their study, Rollins et al show us that recovery after hospitalization for pediatric MIS-C is a long game to play. N=95

krcoombs — 2025-06-03 21:26:52 UTC

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2834758

Discover how stealth microbes can disrupt the vagus nerve, hijack mitochondrial energy systems, and weaken immune responses, setting the stage for a cascade of chronic dysfunctions.

krcoombs — 2025-06-03 23:42:02 UTC

https://www.onethingpod.com/episode-117-the-hidden-microbial-drivers-of-chronic-illness-with-dr-amy-proal/

That is important: the changes we see in muscle tissue in these MECFS and Long COVID patients are not simply due to deconditioning. Something else is happening — and this could be immune-related, vascular, or neurological in origin. This breaks the long-standing assumption that the main issue is inactivity. (23 min)

krcoombs — 2025-06-04 21:01:48 UTC

https://www.youtube.com/watch?v=a8RhrPKI9Pk&t=6s

Long COVID diagnoses were relatively common, occurring in nearly 1 in 25 Medicare beneficiaries, but especially in those with certain chronic conditions and without prior COVID-19 vaccine doses.

krcoombs — 2025-06-09 19:41:18 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-diagnoses-fairly-common-medicare-claims

The toolkit is a collection of resources, guides, and recommendations for community-centered dissemination and communication. The toolkit contains tips that have been effective for writing teams within and outside the NIH RECOVER Initiative.

krcoombs — 2025-06-10 17:42:05 UTC

https://ccphealth.org/wp-content/uploads/2025/06/CEACR-RECOVER-Dissemination-Toolkit.pdf

Restricted access to COVID-19 vaccines will mean more transmission, hospitalizations, and deaths, as well as a higher incidence of Long COVID.

krcoombs — 2025-06-19 15:54:30 UTC

https://thesicktimes.org/2025/06/19/the-federal-government-is-restricting-covid-19-vaccine-access-heres-what-that-means-for-the-ongoing-pandemic-and-people-with-long-covid/

New research reveals that people infected with COVID-19 in California prisons face a lasting, higher risk of diabetes, even months after recovery, underscoring the urgent need for targeted healthcare strategies in vulnerable populations.

krcoombs — 2025-06-19 16:10:46 UTC

https://www.news-medical.net/news/20250618/New-data-show-COVID-19-triggers-spike-in-new-diabetes-cases.aspx

School Indoor Air Quality (IAQ) Fact Sheet Topics: Ventilation, HVAC Filtration, In-Room Air Cleaners, Germicidal Ultraviolet, Electronic Air Cleaners, Disinfectants, Indoor Air Quality Monitoring + During Wildfires

krcoombs — 2025-06-19 17:59:10 UTC

https://www.bdcnetwork.com/home/news/55297051/usgbc-releases-updated-school-indoor-air-quality-iaq-fact-sheet-series

The School IAQ Fact Sheet Series was developed by the Center for Green Schools in partnership with ASHRAE.

Address-LC Study: Bezisterim may work by blocking the production of substances that cause inflammation through toll-like receptors (TLR) pathways known to cause issues in Long COVID.

krcoombs — 2025-06-21 22:02:27 UTC

https://addresslongcovid.com/

She shares how to assess and manage multisystem symptoms—including post-exertional malaise (PEM), dysautonomia, mast cell activation syndrome (MCAS), and hypermobility/connective tissue disorders—with practical strategies that can be implemented in both primary and specialty care settings

krcoombs — 2025-06-21 23:39:14 UTC

https://www.youtube.com/watch?v=oZKw9Qssr3I

If you are caring for someone and need some respite, extra resources, or just someone to talk to - please contact 211.

krcoombs — 2025-06-22 20:05:51 UTC

https://www.211.org/get-help/caregiver-resources

In their analysis, they compared data on more than 3000 blood-based biomarkers from almost 1500 people.They identified 116 markers that differed between the two groups. They also determined that lack of physical activity did not impact the findings--

krcoombs — 2025-06-24 02:53:54 UTC

https://virology.ws/2025/06/23/trial-by-error-an-interview-with-sjoerd-beentjes-lead-author-of-big-data-study-on-blood-based-biomarkers-for-me-cfs/

David F. Putrino, PhD (Mount Sinai Health System, CoRE) gives the CME accredited lecture titled, “Long COVID and Other Infection-Associated Chronic Conditions: A pragmatic guide to assessment, management, and following emerging research trends”

krcoombs — 2025-06-26 19:39:08 UTC

https://www.youtube.com/watch?v=D72Zu_GiVII

(At CenCal Health in Santa Barbara and virtual on January 24, 2025).

If viral particles are identified, the microfluidic technology could be used in clinical trials or related studies to identify SARS-CoV-2 reservoirs in Long COVID blood.

krcoombs — 2025-07-02 01:44:04 UTC

https://polybio.org/projects/microfluidic-capture-to-identify-potential-viral-particles-in-long-covid-blood/

Unfortunately, the media rarely portray people with disabilities, and particularly women and those with invisible conditions, as real people deserving of rights. Instead, we are cast in roles: inspirational angels or deceptive demons.

krcoombs — 2025-07-02 20:26:03 UTC

https://thehill.com/opinion/civil-rights/5373669-trumps-energy-department-is-making-federal-buildings-less-accessible-again/

The CDC estimates from Oct. 1, 2024, through June 7, 2025, COVID-19 caused an estimated 9.8 million to 16.1 million illnesses, 2.4 million to 3.8 million outpatient visits, 270,000 to 440,000 hospitalizations, and 32,000 to 51,000 deaths.

krcoombs — 2025-07-02 21:34:12 UTC

https://www.idse.net/Covid-19/Article/07-25/COVID-19-Impact-2025/77610

Most participants (70.0%) said they would test if they suspected a COVID-19 infection. Factors tied to intent to test were age older than 60 years, excellent health status, trust in the healthcare system, reliance on data to make health decisions, previous completion of a home test, and Black, Hispanic, or mixed race.

krcoombs — 2025-07-02 22:50:53 UTC

https://www.cidrap.umn.edu/covid-19/7-10-us-adults-would-still-test-covid-if-they-suspected-infection-survey-suggests

Preliminary analysis of baseline muscle biopsy samples indicates that people with ME/CFS have a reduced mitochondrial biomass, roughly correlating with the number of mitochondria. Some people also show altered electron transport chain activity (or mitochondrial function).

krcoombs — 2025-07-03 23:31:34 UTC

https://www.youtube.com/watch?v=U_78L-mNo4o

If colleges and universities like Stanford want to claim they nurture young adults, it is imperative that they work to prevent and treat Long COVID. Especially because the disease often is harsher on younger adults.

krcoombs — 2025-07-05 17:25:27 UTC

https://thesicktimes.org/2025/07/03/universities-get-an-f-on-long-covid-heres-how-they-can-support-their-students-and-reduce-covid-19-cases/

Authorship system serves as a promising blueprint for other research teams seeking to engage diverse representatives in the development of presentations and publications, demonstrating how such collaborations can enhance both the quality and real-world impact of scientific research.

krcoombs — 2025-07-11 18:07:42 UTC

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-025-12914-3

The announcement was especially puzzling considering that just a week earlier, the FDA’s chief medical officer and director of its Center for Biologics Evaluation and Research, had published an opinion piece in The New England Journal of Medicine featuring the CDC’s list of underlying conditions that increase the risk of severe COVID-19, which includes pregnancy and recent pregnancy.

krcoombs — 2025-07-12 22:33:09 UTC

https://jamanetwork.com/journals/jama/fullarticle/2836638?guestAccessKey=ec8ff8dd-da47-4b16-bfb5-cc19a033c990

Marty Makary: FDA Commissioner

Vinay Prasad: FDA Director of CBER

The Vaccine Integrity Project’s work is inherently collaborative and is not trying to stand in for government bodies. We aim to lock arms with doctors, scientists, and public health experts and promote integrity, openness, and scientific rigor.

krcoombs — 2025-07-14 16:20:46 UTC

https://www.statnews.com/2025/07/03/vaccine-integrity-project-michael-osterholm-cidrap-rsv-flu-covid/

Our analysis revealed biannual COVID-19 peaks in late summer and winter, a pattern that is expected to persist as long as the rapid evolution of SARS-CoV-2 and cyclical S1 diversity continues.

krcoombs — 2025-07-14 17:35:15 UTC

https://wwwnc.cdc.gov/eid/article/31/8/25-0451_article#suggestedcitation

The aim of the study is to understand the mechanism behind PEM in post-COVID patients by investigating how immune cells, such as mast cells, T cells, macrophages and neutrophils, contribute to muscle repair, inflammation and damage.

krcoombs — 2025-07-17 16:23:03 UTC

https://amsterdamumc.org/en/research/institutes/amsterdam-movement-sciences/news/grant-awarded-in-the-nwa-orc-round-2024-bio-compass-1.htm

'I do know that, in the context of the time, what we did was not unreasonable, and that we acted in good faith to protect our students, their families and their communities'.

krcoombs — 2025-07-19 02:30:02 UTC

https://thehill.com/opinion/education/5407059-teachers-unions-covid-19-school-closures/

In Nature Communications, authors describe a novel web platform for genomic surveillance of the SARS-CoV-2 virus called CoVerage, which could identify variants of concern (VOCs) up to 3 months before the World Health Organization (WHO) is able to classify the variants that can lead to surges of COVID-19 activity.

krcoombs — 2025-07-21 21:28:59 UTC

https://www.cidrap.umn.edu/covid-19/new-surveillance-tool-can-predict-covid-variants-concern

Create a list of scientific resources, Stop apologizing and normalize expressing your needs, Set boundaries, Find support within the community, Take care of yourself

krcoombs — 2025-07-22 02:42:58 UTC

https://tinyurl.com/y6vd7fpt

“A pattern woven throughout history reveals an unsettling truth: Although acute infections such as influenza and COVID-19 can devastate populations in the short term, their lingering effects—the so-called long flus of previous generations—have proven to be quiet killers.

krcoombs — 2025-07-22 16:31:42 UTC

https://emilymendenhall.substack.com/p/a-history-of-post-viral-syndromes

Stronger evidence that ME/CFS has abnormally increased lactate, and this indicates a neuroinflammatory issue, abnormal activation of the microglia in the brain, oxidative stress, or maybe a problem with basic energy, or some mitochondrial issue.

krcoombs — 2025-07-24 12:08:30 UTC

https://www.youtube.com/watch?v=BeFv7XJnXhg

“Too many people with disabilities still face barriers to inclusion, particularly people with more significant support needs. Disabled people still face discriminatory stereotypes and bias, for example, in navigating the health care system and in parenting,” Barkoff said. “I am very concerned about the serious threats to disability rights by the courts and new federal policies, creating the real possibility of the undoing of years of progress.”

krcoombs — 2025-07-27 03:06:22 UTC

https://www.disabilityscoop.com/2025/07/24/as-nation-marks-35th-anniversary-of-the-ada-advocates-warn-of-backslide/31553/

What we’re seeing now is the result of years of bipartisan disinvestment. It’s just happening louder, faster, and crueler than before.

krcoombs — 2025-07-27 03:53:47 UTC

https://www.commondreams.org/opinion/disability-pride-month-survival

Registration is now open for Pathways to Treatments on Sept 9th, the second annual RECOVER-TLC workshop.

krcoombs — 2025-07-28 18:56:36 UTC

https://fnih.org/our-programs/recover-tlc-will-advance-long-covid-research/recover-tlc-hybrid-workshop/?bbeml=tp-dnwJc27W802R9IacBWspeg.jAhm7mPF9CUaairpwt0A4uA.rSpdTx43nck-oNCPldfem0w.leFYIDv5Vi0GO5lA42Oy9Ew

Healthcare providers can help patients with Long COVID by validating their symptoms and connecting them to additional care, services, and supports, as appropriate.

krcoombs — 2025-07-28 20:20:26 UTC

https://www.cdc.gov/long-covid/hcp/clinical-guidance/index.html

New 7/25: https://www.cdc.gov/long-covid/index.html

Folks should be testing, whether they’re high risk or not, but it’s particularly important for high-risk people to get tested for COVID (and for anyone around high-risk folks to do the same). High-risk folks include those over 65, people younger than 65 with chronic medical conditions, and pregnant people.

krcoombs — 2025-07-29 00:04:45 UTC

https://www.newsbreak.com/news/4140012150667-covid-has-evolved-but-have-covid-tests-experts-explain-how-effective-they-still-are?s=dmg_local_email_bucket_1.web2_fromweb&emailId=Kv59kki&uid=-1#topdoc

https://www.fda.gov/medical-devices/coronavirus-covid-19-and-medical-devices/home-otc-covid-19-diagnostic-tests#list

The administration has used every lever to remove the federal government’s ability to enforce disability civil rights laws; dismantle DEIA efforts that protect; undermine health care affordability and access, destroy public health infrastructure; damage the ability of disabled children to have appropriate public education; slash services, benefits, and regulations and decrease disability protections in employment.

krcoombs — 2025-07-29 14:21:31 UTC

https://www.americanprogress.org/article/the-trump-administrations-war-on-disability/

As of July 29, 2025, we estimate that COVID-19 infections are growing or likely growing in 40 states, declining or likely declining in 0 states, and not changing in 9 states.

krcoombs — 2025-07-29 19:57:53 UTC

https://www.cdc.gov/cfa-modeling-and-forecasting/rt-estimates/index.html

This study is testing the hypothesis that Long COVID in children is associated with chronic reservoirs of SARS-CoV-2 in the gut, increased gut epithelial barrier permeability (“leaky gut”), and leakage of viral spike protein into the bloodstream.

krcoombs — 2025-07-31 22:33:39 UTC

https://polybio.org/projects/sars-cov-2-gut-persistence-intestinal-permeability-and-spike-protein-in-pediatric-long-covid-mis-c/

This Research Opportunity Announcement (ROA OTA-21-015K) is effective immediately. Proposals must be initiated upon award and adhere to NHLBI policy guidance for long-term and ancillary research studies.

krcoombs — 2025-08-05 14:30:42 UTC

https://recovercovid.org/funding/roa-ota-21-015k

NHLBI: National Heart Lung and Blood Institute

Ancillary research studies: independent research project that uses data or samples from parent study to extend knowledge in scientific areas beyond its original scope.

Dr. Iwasaki’s lab will investigate whether these autoantibodies can actually cause symptoms such as fatigue, pain, cognitive issues, and motor dysfunction by introducing patient-derived antibodies into mice and analyzing their effects.

krcoombs — 2025-08-07 00:23:06 UTC

https://www.youtube.com/watch?v=9ar0xtGwmrQ&t=9s

Eighteen million Americans have been diagnosed with long COVID. One couple shares their experience navigating the condition’s many symptoms and its emotional toll — together.

krcoombs — 2025-08-09 02:32:07 UTC

https://www.wunc.org/show/embodied/2025-08-08/long-covid-love-relationship-marriage

Transcript: https://www.wunc.org/2025-07-31/when-long-covid-rewrites-your-love-story-transcript

“As he struggled with Long COVID, he became a dedicated advocate for more aggressive medical research and treatment development, and for formal recognition of Long COVID as a disability.”

krcoombs — 2025-08-09 16:29:51 UTC

https://thesicktimes.org/2025/08/08/black-swan-graphic-designer-derrick-kardos-dies-at-53-due-to-complications-of-long-covid/

Now, five years later, and two years on from her death, Kara’s family is releasing her second fundraising album, “In Limbo,” in memory of a beloved daughter and sister.

krcoombs — 2025-08-09 16:30:09 UTC

https://thesicktimes.org/2025/08/08/posthumous-album-of-singer-kara-jane-released-on-severe-me-awareness-day/

“I’m not grieving it because of my chronic illnesses. I’m grieving because of the industry itself and its inability to even have conversations about access and access needs.”

krcoombs — 2025-08-09 18:47:32 UTC

https://newfeeling.ca/2025/08/08/covid-is-still-a-working-class-issue/

This publication has been created by the World ME Alliance in partnership with the Severe ME Advocacy Group, to serve those amongst us enduring the most profound suffering. It speaks with the authority of both lived experience and clinical expertise, and demands dignity, safety, and justice in care.

krcoombs — 2025-08-09 18:48:02 UTC

https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/

This manual provides evidence-based guidance for clinicians working with patients affected by infection-associated chronic illnesses, including Long COVID, ME/CFS, and chronic tick and vector-borne illnesses such as Post-Treatment Lyme Disease Syndrome.

krcoombs — 2025-08-09 19:47:57 UTC

https://www.coresinai.org/manual

This study evaluates the efforts of Oregon’s largest school district to improve indoor air quality and mitigate airborne disease transmission in the wake of the COVID-19 pandemic.

krcoombs — 2025-08-11 16:32:28 UTC

https://www.sciencedirect.com/science/article/pii/S295036202500044X?via%3Dihub

The cumulative incidence of long COVID increased with the number of reported COVID-19 infections, rising from 13.7% for a single infection to 37.0% for three infections in the online survey, and from 11.8% (a single infection) to 29.5% (≥3 infections) in the telephone survey. N=22,496

krcoombs — 2025-08-12 12:36:56 UTC

https://www.ijidonline.com/article/S1201-9712(25)00236-X/fulltext

Dr. Younger explains the DecodeME study, A humongous genetic study in ME/CFS has just been released with over 15,000 ME/CFS participants.

krcoombs — 2025-08-12 19:17:58 UTC

https://www.youtube.com/watch?v=clwN51nkZAk

"The macroeconomic effects of the pandemic are well established, while the individual financial toll and impact on return to work remain underexplored.

krcoombs — 2025-08-12 20:33:17 UTC

https://www.cidrap.umn.edu/covid-19/financial-impact-long-covid-can-linger-years-study-finds

“Releasing this manual is a way for us not only to continue setting the standard of care, but also to help ensure that any clinician can have the tools and knowledge they need in order to adopt our practices and provide high-quality, evidence-informed practice for people with IACIs all over the world.”

krcoombs — 2025-08-14 02:26:44 UTC

https://www.beckershospitalreview.com/quality/patient-safety-outcomes/mount-sinai-publishes-1st-us-guide-for-infection-linked-chronic-illnesses/

Protect/improve access to Social Security offices, increase funding by $5 billion, restore assistance, Safeguard data, and remove DOGE’s authority.

krcoombs — 2025-08-14 20:47:03 UTC

https://www.sanders.senate.gov/press-releases/news-sanders-leads-bill-to-reverse-the-cuts-trump-and-musk-made-to-social-security-and-protect-benefits/

This resource provides a framework for understanding what PEM is (and is not), a framework for understanding the role of nervous system regulation in managing PEM, and tools for exploring energy regulation strategies.

krcoombs — 2025-08-16 03:46:20 UTC

https://allbrainsbelong.org/pem/?fbclid=IwQ0xDSwMM3lJleHRuA2FlbQIxMAABHqyqmGKwUf2sYicrz_l7YA8O8wDmgg8Gg9T8TLcBNs8Z75KrZKqcGbu87Mm9_aem_xdm4U7ZYTMC2aaCP_7pd1g&sfnsn=mo, https://allbrainsbelong.org/wp-content/uploads/2025/08/EnergyStrategiesForPEM_BW.pdf

Given the complexity of Long COVID, both as a complex disease state and as a social issue, a multipronged response is necessary.

krcoombs — 2025-08-16 22:40:05 UTC

https://journals.sagepub.com/doi/full/10.1177/08901171241308066a

"The CARTESIAN study makes the case that COVID-19 has aged our arteries, especially for female adults. The question is whether we can find modifiable targets to prevent this in future surges of infection, and mitigate adverse outcomes in those afflicted with COVID-19-induced vascular ageing." N-=2390

krcoombs — 2025-08-18 20:54:45 UTC

https://www.cidrap.umn.edu/covid-19/women-may-have-increased-risk-blood-vessel-aging-after-covid

Long COVID was associated with work limitations, cognitive dysfunction, and sickness absenteeism among employed US adults. N=26,270

krcoombs — 2025-08-19 20:30:35 UTC

https://onlinelibrary.wiley.com/doi/10.1002/ajim.70014

The current project is testing the hypothesis that the higher prevalence of long COVID in women is initiated by persistent SARS-CoV-2 virus, particularly within tolerogenic mucosal sites such as the gut and female reproductive tract, including endometrial tissue.

krcoombs — 2025-08-20 00:46:55 UTC

https://polybio.org/projects/sars-cov-2-persistence-t-cell-activity-in-the-female-reproductive-tract/

PEMGARDA (pemivibart) is authorized by the U.S. Food and Drug Administration (FDA) for pre-exposure prophylaxis of COVID-19 in certain immunocompromised patients.

krcoombs — 2025-08-20 00:47:25 UTC

https://investors.invivyd.com/news-releases/news-release-details/invivyd-announces-continued-neutralizing-activity-pemgardar

“We have intentionally designed a remote trial to ensure we can include housebound and bed bound participants - which includes about a quarter of people with Long COVID who are systematically excluded from trials that require participants to go to a specific location".

krcoombs — 2025-08-20 02:37:10 UTC

https://www.contagionlive.com/view/remote-long-covid-trial-to-evaluate-repurposed-drug-across-us

New research portion: Dr. Locci and team hypothesize two mechanisms by which this may occur: Epstein-Barr virus (EBV) may alter the developmental programming of SARS-CoV-2-specific B cells, leading them down low-quality antibody pathways, or EBV-infected B cells could be killed off by cytotoxic T cells.

krcoombs — 2025-08-20 18:14:03 UTC

https://polybio.org/new-grant-expands-long-covid-lymph-node-study/

They called on Kennedy to uphold his pledge to safeguard the American public by taking several steps by September 2, which include ceasing the spread of inaccurate health information, affirming the CDC’s integrity, and guaranteeing the safety of the HHS workforce.

krcoombs — 2025-08-20 21:34:11 UTC

https://www.cidrap.umn.edu/anti-science/current-and-former-hhs-staff-respond-violent-cdc-attack

This presentation is on the Hi-OxSR sequential rebreather and its use as a novel treatment for long COVID-associated cognitive dysfunction. The presentation will discuss the mechanism of COVID that may be responsible for the cognitive dysfunction, the prevalence and significance of the dysfunction, and then how the Hi-OxSR may be able to reduce the dysfunction.

krcoombs — 2025-08-22 14:54:01 UTC

https://www.youtube.com/watch?v=Mtsq069F0oQ

Researchers found a 66% higher risk of asthma and 74% higher risk of chronic sinusitis after COVID-19. N= >5M

krcoombs — 2025-08-23 13:09:21 UTC

https://www.ktvu.com/news/covid-asthma-sinusitis-vaccine-study?link_source=ta_first_comment&taid=68a94adec948570001c47ebd

Long COVID researchers gather in Santa Fe ,Early Long COVID trials of Paxlovid and MABs failed, Three clinical trials are testing JAK inhibitors, Covid-19 reinfections are further disabling people with Long Covid.

krcoombs — 2025-08-23 15:55:46 UTC

https://www.iheart.com/podcast/269-still-here-a-podcast-from-223227145/?fbclid=PAVERTVgMWw81leHRuA2FlbQIxMAABp4sbD742PdPu4uo0DxvShTYQRdJOmOItA2WMVzWsdmuXpOZaELxVjz_58cT-_aem_Y49kxH-yuegrQq5lhrxFzg

In high-risk patients with COVID-19, nirmatrelvir/ritonavir treatment shortened the median duration to return to usual health and activities and significantly accelerated the resolution of COVID-19 symptoms while providing sustained relief from these symptoms compared with placebo.

krcoombs — 2025-08-24 02:49:02 UTC

https://www.medscape.com/viewarticle/nirmatrelvir-speeds-recovery-cuts-symptoms-covid-19-2025a1000m3l?ecd=WNL_trdalrt_pos1_250823_etid7664012&uac=123390EZ&impID=7664012

Because when you cut science, you don't just cut funding. You cut futures. You cut cures. You cut hope. And hope is something we can't afford to lose.

krcoombs — 2025-08-25 20:15:20 UTC

https://www.medpagetoday.com/opinion/second-opinions/117114

ACOG recommended all women pregnant, planning to become pregnant, or nursing receive a COVID-19 booster or seasonal dose. This recommendation contradicts guidance from the Centers for Disease Control and Prevention (CDC), after Secretary Robert F. Kennedy Jr. announced drastic reductions in the groups recommended to receive COVID-19 vaccines annually.

krcoombs — 2025-08-25 21:53:27 UTC

https://www.cidrap.umn.edu/covid-19/veering-cdc-acog-recommends-maternal-vaccination-against-covid-19

This is not just about data. It is about whether a child is believed when they say something is wrong. Every pathway to better care begins with research that captures the truth of what children are living.

krcoombs — 2025-08-27 00:05:50 UTC

https://longcovidfamilies.org/blog-early-pediatric-long-covid-research/

To determine the degree to which the oral cavity can serve as a window into the identification Long COVID immune, clotting, microbiome, and viral protein biomarkers.

krcoombs — 2025-08-28 23:27:34 UTC

https://polybio.org/projects/long-covid-oral-cavity-biomarker-study/

Using total-body PET imaging to get a better understanding of long COVID disease is the goal of a new project at the University of California, Davis, in collaboration with UC San Francisco.

krcoombs — 2025-08-29 11:59:11 UTC

https://www.miragenews.com/total-body-pet-imaging-takes-look-at-long-covid-1523336/

As more than 70 million American adults have disabilities, efforts to improve digital health accessibility and equity for people with disabilities must become a national priority

krcoombs — 2025-08-30 01:20:37 UTC

https://onlinelibrary.wiley.com/doi/10.1111/1468-0009.70049

While these associations remain exploratory, they highlight the potential for autoantibody-transcriptional crosstalk as a contributing factor to thromboinflammation in severe disease.

krcoombs — 2025-09-01 21:43:55 UTC

https://www.nature.com/articles/s41598-025-17054-6

"I was fired after 29 days because I held the line and insisted on rigorous scientific review". WSJ Paywall

krcoombs — 2025-09-04 21:14:50 UTC

https://www.wsj.com/opinion/robert-f-kennedy-jr-the-cdc-and-me-b4ca2eaa

Project Summary: To determine the underlying genetic causes and other modifying factors like sex hormones and interferon responses impacting restrained T cell responses to SARS-CoV-2 & viral persistence in Long COVID.

krcoombs — 2025-09-04 21:34:52 UTC

https://polybio.org/projects/genetic-variants-restrained-antiviral-immunity-in-severe-longcovid/

A recent Yale-led study found potentially hundreds of thousands of US healthcare workers have been affected. According to a January 2025 HHS report, nearly 1 in 4 healthcare workers (23.5%) with long COVID reported their symptoms significantly affected their work.

krcoombs — 2025-09-04 21:37:50 UTC

https://www.medscape.com/viewarticle/long-covid-hitting-doctors-and-nurses-hard-2025a1000n7q

ME/CFS diagnosis requires: Post-exertional malaise (PEM): Worsening of symptoms, typically occurring 24 – 72 hours following even minor physical or mental exertion, is the hallmark feature. And cognitive difficulties (“brain fog”), sleep difficulties, a range of other symptoms, including pain and sensory hypersensitivity, and postural orthostatic tachycardia syndrome (PoTS).

krcoombs — 2025-09-05 02:17:24 UTC

https://www.meresearch.org.uk/factsheet-the-immune-system-and-me-cfs/

But he shouldn’t expect to achieve that noble goal with a secretary who looks down on modern medicine and undermines our ability to respond to pandemics.

krcoombs — 2025-09-05 22:51:44 UTC

https://www.sanders.senate.gov/op-eds/rfk-jr-s-dangerous-designs-for-public-health/

“We’re launching a Long COVID Consortium—bringing together the best doctors in the country who’ve built reputations for successfully treating this condition. One of them is Dr. Bruce Patterson, another is Dr. Jordan Vaughn, and there are others, many from Florida, who are doing spectacular things,” Kennedy said.

krcoombs — 2025-09-06 20:39:36 UTC

https://wibc.com/722764/sen-todd-young-challenges-hhs-over-long-covid-progress/

A project performed in concert with the Steve & Alexandra Cohen Foundation to determine the degree to which patients with long COVID, ME/CFS and hypermobile EDS diagnoses harbor tick-borne/vector-borne pathogens in blood.

krcoombs — 2025-09-12 17:24:06 UTC

https://polybio.org/projects/impact-of-tick-borne-vector-borne-infection-on-post-covid-symptoms/

September 9/10 NIH RECOVER TLC Workshop: 25 video recordings available

krcoombs — 2025-09-16 02:07:40 UTC

https://www.youtube.com/watch?v=Q_tSIW6Lu08&list=PLqByiC0rX0ZPNYnGnFgBQzaR71VcOkys_

OMF researchers from Montreal, Uppsala, and the OMF computation team looked at how Haptoglobin (Hp) levels and genetic variants behave in people with ME/CFS, especially during post-exertional malaise (PEM)—the worsening of symptoms after even minor activity.

krcoombs — 2025-09-16 20:47:00 UTC

https://www.omf.ngo/haptoglobin-pem-mecfs/

This book is our guide for you to understand Disability, dismantle ableist systems, and build unapologetically accessible futures.

krcoombs — 2025-09-16 20:50:21 UTC

https://disabledbysociety.com/unlearning-ableism-the-ultimate-no-nonsense-guide-to-understanding-disability-and-unlearning-ableism/

I recently spoke with Dr. Lipkin about the study, his earlier work on what was then being called chronic fatigue syndrome, the role of chronic inflammation, ongoing research projects, and the prospects for effective treatments.

krcoombs — 2025-09-16 20:55:53 UTC

https://www.youtube.com/watch?v=-_ihsJPThp0

Streamed live on Sep 18, 2025, 'Invisible Illness: Leading the Way on Long COVID'

krcoombs — 2025-09-18 11:29:21 UTC

https://www.youtube.com/live/-eorSN8x498?si=W7xglk4CIx1CFoKX

On Panel: HHS: RFK jr.,Johnston Senators: Young, Cassidy, Marshall DRs: Iwasaki,Peluso,Putrino,Patterson,Al-Aly,Vaughn FDA: Makary, NIH: Bhattacharya, ARPA-H: Roos, CDC: O'Neill, Redfield Advocates: Russell,Olsen

Public health professionals should promote awareness of Long COVID, help combat the stigma that patients with Long COVID encounter, and emphasize prevention of Long COVID, by getting an updated COVID-19 vaccine. 9/3/25

krcoombs — 2025-09-18 18:39:11 UTC

https://www.cdc.gov/long-covid/php/scientific-approach/index.html

This clinical consensus statement emphasizes the necessity of early recognition of Long COVID, a personalized approach, individualized rehabilitation, evidence-based pharmacotherapy, interventions, and long-term monitoring to mitigate cardiovascular complications.

krcoombs — 2025-09-19 02:30:33 UTC

https://academic.oup.com/eurjpc/advance-article/doi/10.1093/eurjpc/zwaf540/8255559#532077239

“This was not a listening session — it was an action session,” Secretary Kennedy said. “We are driving solutions to diagnose, prevent, and treat Long COVID, and we stand with the patients and families whose lives it has disrupted. Today’s steps mark the start of a sustained national effort."

krcoombs — 2025-09-19 04:01:26 UTC

https://www.hhs.gov/press-room/hhs-secretary-kennedy-long-covid-roundtables-action.html

When the National Institutes of Health (NIH) released its recent Research in Context feature on mitochondria, it did something that may have gone unnoticed by many but was profoundly significant for millions: it explicitly named myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

krcoombs — 2025-09-22 12:44:48 UTC

https://batemanhornecenter.org/mitochondria-in-the-spotlight/

Join Dr Rob Wüst and Dr Binita Kane for a clear, evidence-based discussion of skeletal muscle changes in Long COVID and ME/CFS, focusing on mitochondrial function, energy metabolism, and microvascular factors, and why this is not the same as being “unfit” or "just deconditioned".

krcoombs — 2025-09-22 12:46:08 UTC

https://www.youtube.com/live/8i4iHaFlUiw

RFK Jr. discusses the effects of long Covid with Republican lawmakers. Read the transcript here.

krcoombs — 2025-09-23 17:05:56 UTC

https://www.rev.com/transcripts/long-covid-roundtable

We’re redefining post-viral recovery through scientific innovation. Our lead therapy known as The PridCor Protocol is a proprietary combination of 3 elements including valacyclovir, and celecoxib that is designed to suppress viral reactivation and reduce systemic inflammation which are two key biological drivers of Long COVID.

krcoombs — 2025-09-23 17:15:27 UTC

https://pridcor.com/

CDC’s parent agency, the Department of Health and Human Services, released a revised telework policy in August – effective immediately – that does not include telework as a reasonable accommodation.

krcoombs — 2025-09-24 20:20:12 UTC

https://www.afge.org/article/cdc-removes-remote-work-as-reasonable-accommodation-for-employees-with-disabilities-backtracks-after-union-pressure/

The onslaught of ongoing Covid cases also makes it more difficult for immunocompromised people to find jobs that let them stay safe from infection—which can have successively worse effects and escalate the risk of Long Covid.

krcoombs — 2025-09-26 13:04:37 UTC

https://www.motherjones.com/politics/2025/09/trump-rfk-medicaid-work-requirements-disabled-labor/

We spoke recently about the symposium, the current state of Long COVID research, the debate over viral persistence, research on prolonged symptoms reported after COVID-19 vaccination, and related issues.

krcoombs — 2025-09-29 02:02:49 UTC

https://virology.ws/2025/09/26/trial-by-error-yales-akiko-iwasaki-on-the-keystone-symposium-the-debate-on-viral-persistence-and-related-issues/

In this cohort of predominantly younger women with highly symptomatic long COVID, POTS is common and presents with overlapping symptoms between POTS and non-POTS patients. N=467

krcoombs — 2025-10-02 12:10:50 UTC

https://www.ahajournals.org/doi/10.1161/CIRCEP.124.013629

“It’s shameful to me that we live in the richest country in the world, yet we are cutting nearly a trillion dollars in lifesaving and life-sustaining health care for people who need it most.”

krcoombs — 2025-10-03 17:06:56 UTC

https://prismreports.org/2025/09/29/big-beautiful-bill-medicaid-vulnerable-groups/

Despite this shared vulnerability, and in stark contrast to the widespread solidarity observed during the acute phases of the COVID 19 pandemic, solidarity seems to be all but absent when it comes to long COVID. (Paywall)

krcoombs — 2025-10-05 17:28:20 UTC

https://link.springer.com/article/10.1057/s41285-025-00232-x

The project will determine if replication-competent SARS-CoV-2 virus can be identified in the megakaryocytes (bone marrow-derived cells) and platelets of patients with Long COVID.

krcoombs — 2025-10-09 03:27:17 UTC

https://polybio.org/projects/sars-cov-2-persistence-and-impact-on-long-covid-megakaryocytes-platelets/

People with ME/CFS -- and now long COVID -- often struggle to retain disability benefits because gatekeepers have not been properly educated about these diseases, and many doctors and lawyers lack expertise on how to properly document an ME/CFS disability claim.

krcoombs — 2025-10-09 17:54:04 UTC

https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Part II: We’ll focus on the two closest genes and genes in regions with few other genes that have less competition.

krcoombs — 2025-10-14 00:56:12 UTC

https://mecfsscience.org/genes-pointing-to-the-brain-decodeme-part-ii/

RECOVER initiative 2.0 continuation study: Tier 2 and 3 testing

krcoombs — 2025-10-14 18:21:25 UTC

https://illinet.org/about-recover-study/

Whilst it is a lesser known entity therefore requires a greater scientific evidence base, research suggests that SFN occurs more frequently in ME/CFS and certain other conditions associated with dysautonomia than in the general population.

krcoombs — 2025-10-15 02:23:17 UTC

https://www.meresearch.org.uk/what-is-small-fibre-neuropathy-sfn/

These guidelines are important because CPET has long been one of the few tools that objectively capture the hallmark feature of ME/CFS: post-exertional malaise (PEM).

krcoombs — 2025-10-16 00:22:07 UTC

https://batemanhornecenter.org/new-cpet-guidelines-what-they-mean-for-people-with-me-cfs/

“We documented work absences comparable to those seen during flu seasons extending across the entire year as the new baseline.”

krcoombs — 2025-10-16 14:38:16 UTC

https://ysph.yale.edu/news-article/post-pandemic-covid-19-linked-with-high-numbers-of-workforce-absences-and-exits/

"If the patient, if the kid is not comfortable talking with the specific counselor, kick them to the curb and find someone else. Especially post-pandemic, it can be really hard to find somebody or a really long wait, and I completely understand that, but finding somebody with whom your child vibes is really worth its weight".

krcoombs — 2025-10-16 21:50:51 UTC

ps://www.youtube.com/watch?v=MRH-yVJ_FyQ

An ongoing area of research centers on whether long-term illness initiated by infection may be associated with variance in the craniocervical junction or sacral spinal cord structure.

krcoombs — 2025-10-19 13:55:08 UTC

https://polybio.org/projects/case-study-5/

But many experts believe this estimate vastly undercounts the number of seniors with long COVID because the symptoms may be confused with age-related conditions.

krcoombs — 2025-10-21 01:42:39 UTC

https://www.medscape.com/viewarticle/long-covid-more-common-seniors-what-doctors-need-know-2025a1000se4

This episode welcomes Dr. Leo Galland, Internal Medicine Specialist with over 40 years of experience working with complex conditions, which now includes Long Covid and of course ME/CFS.

krcoombs — 2025-10-21 01:45:30 UTC

https://www.buzzsprout.com/1835170/episodes/16916296

Howie and Harlan are joined by Yale School of Medicine immunologist Akiko Iwasaki, a leading authority on vaccines and long COVID.

krcoombs — 2025-10-24 11:31:12 UTC

https://insights.som.yale.edu/podcasts/health-veritas/akiko-iwasaki-what-have-we-learned-about-long-covid

WE DEMAND DEDICATED ACTION. LONG COVID VOICES MUST LEAD LONG COVID POLICIES AND REPRESENTATION.

krcoombs — 2025-10-28 12:44:09 UTC

https://longcovidriseup.eu/lc-declaration/

I launched The Frontlines: Post Virals to support the very same people who saved me- physicians who treat Long COVID and ME/CFS.

krcoombs — 2025-10-31 19:00:54 UTC

https://heyzine.com/flip-book/thefrontlinespostviralsoctober2025#page/1

Anisa Corona: Editor in Chief

The Long COVID Repository is intended to serve as a reference for busy primary care clinicians who face uncertainty and lack of evidence-based information to recognize, diagnose, and treat Long COVID. While it provides links to more detailed information and source documents, it is not an exhaustive list of Long COVID resources and may need to be updated as additional resources and tools are developed and published.

krcoombs — 2025-10-31 19:13:37 UTC

https://cmss.org/programs-and-resources/long-covid-resource-repository/

For pediatricians, recognizing long COVID requires vigilance, especially when families don’t connect lingering symptoms to past infections, Yonts said.“This is real, and this is a biologic, new-onset chronic illness.”

krcoombs — 2025-11-01 01:34:05 UTC

https://www.medscape.com/viewarticle/secondary-infections-and-long-covid-kids-what-pediatricians-2025a1000tji

In fibromyalgia, glial cells, which support neurons, are activated, causing an inflammatory response. LDN blocks a receptor that activates glial cells, stopping the inflammatory cascade.

krcoombs — 2025-11-01 01:44:18 UTC

https://www.medscape.com/viewarticle/label-treatment-helps-many-fibromyalgia-2025a1000tjm?ecd=WNL_trdalrt_pos1_251031_etid7842555&uac=123390EZ&impID=7842555

What we've really been finding is that SARS-CoV-2 is able to persist for a long period of time in various tissues across the body. We've also been finding that there are profound changes in immune responses and inflammation in these tissues as well.

krcoombs — 2025-11-02 20:52:53 UTC

https://youtu.be/6kC1lyY6hPc

“I didn’t ask to be a Long COVID survivor,” Lydia said. “But this is where I’m at, and I will use the platform I have established to advocate for those of us who need it.”

krcoombs — 2025-11-05 16:20:35 UTC

https://recovercovid.org/news/mother-and-daughter-recover-representatives-share-their-journey-recovery-caregiving-and

“None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective." N=328

krcoombs — 2025-11-10 17:10:03 UTC

https://recovercovid.org/news/recover-neuro-clinical-trial-shares-results-three-non-drug-treatments-cognitive-symptoms-long

Older adults are more vulnerable to having long COVID due to a few reasons.

krcoombs — 2025-11-10 18:10:55 UTC

What Is Long COVID? Symptoms, Causes, and Support Resources

https://www.ncoa.org/older-adults/health/physical-health/covid-19/

This guide explains the basics and how caregivers can play a meaningful role.

krcoombs — 2025-11-10 22:27:46 UTC

https://solvecfs.org/wp-content/uploads/2025/11/ERISA_110625.pdf

Monday on Midday Edition, we sit down with Dr. Eric Topol to hear more about the trial and the state of long COVID research and treatment today.

krcoombs — 2025-11-11 01:29:16 UTC

https://www.kpbs.org/podcasts/kpbs-midday-edition/scientists-launch-new-trial-for-long-covid-treatment

In an interview with Dr. Ron Davis and Dr. David Systrom, two of OMF’s Directors, they talk about what they think is behind ME/CFS. These main ideas center around problems with oxygen supply and the ability to produce energy.

krcoombs — 2025-11-11 20:19:43 UTC

https://www.omf.ngo/ron-davis-and-david-systrom-interview/

https://www.omf.ngo/ron-davis-and-david-systrom-interview-transcript/

Storytelling is a powerful form of resistance. It leaves evidence that we were here in a society that devalues, excludes, and eliminates us.

krcoombs — 2025-11-16 03:42:06 UTC

https://thesicktimes.org/2025/11/15/alice-wong-disability-activist-and-luminary-dies-at-51/

Our findings show that Hypermobile Ehlers-Danlos Syndrome (hEDS) may be more common than previously thought and that such patients face higher risks after COVID-19. N= 300K

krcoombs — 2025-11-18 02:08:22 UTC

https://www.medrxiv.org/content/10.1101/2025.10.22.25338573v1

Recordings of the online Symposium, where PolyBio-supported researchers and collaborators presented updates on their projects.

krcoombs — 2025-11-18 12:48:23 UTC

https://polybio.org/fall-2025-symposium/

Tools for Everyday Support. Reliable Resources for Families Navigating pediatric Long COVID. Developed with families and reviewed by pediatric clinicians, these tools offer clear, reliable support.

krcoombs — 2025-11-18 21:36:53 UTC

https://longcovidfamilies.org/resources/

This is another clinical scenario where the ddPCR assay offers a clear advantage by detecting active bacterial presence rather than relying on indirect immune markers.

krcoombs — 2025-11-19 00:01:12 UTC

https://www.cidrap.umn.edu/diagnostics/new-test-promises-faster-more-accurate-lyme-disease-diagnosis-researchers-say

At least eight people with ties to the Brownstone Institute hold or recently held senior positions at federal health agencies or key roles advising the government, exercising significant authority over access to vaccines and scientific research.

krcoombs — 2025-11-22 14:33:43 UTC

https://kffhealthnews.org/news/article/brownstone-institute-vaccines-acip-cdc-jeffrey-tucker-bhattacharya-kulldorff/?email=467cb6399cb7df64551775e431052b43a775c749&emaila=12a6d4d069cd56cfddaa391c24eb7042

Download our Impact Report to learn more about how we’re accelerating breakthroughs in Long COVID and related chronic conditions.

krcoombs — 2025-11-22 19:49:34 UTC

https://polybio.org/impact-report/

What is inarguable is that Leslie wanted safety for you and he wanted it for himself. You are deserving of a calm life of predictability, safety, and security.

krcoombs — 2025-11-23 02:33:57 UTC

https://adamumak.medium.com/leslie-lee-iii-funeral-for-a-friend-782eaf4f4133

Anyone wishing to review draft protocol synopses and submit feedback must register to become a public commenter through the RECOVER-TLC Collaborator Portal.

krcoombs — 2025-11-24 14:33:04 UTC

https://recovercovid.org/news/recover-tlc-invites-public-comments-upcoming-clinical-trials

In the United States alone, analyses suggest that long COVID may be responsible for $170 billion in annual lost wages, with some estimates ranging even higher.

krcoombs — 2025-11-25 01:05:55 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-takes-1-trillion-global-economic-toll-each-year-analysis-suggests

Detailed notes, objective testing, and legal assistance if necessary are the keys to obtaining disability benefits for patients who are unable to work due to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or long COVID.

krcoombs — 2025-11-27 02:02:09 UTC

https://www.medscape.com/viewarticle/how-help-me-cfs-and-long-covid-disability-claims-2025a1000x2z

Long COVID Education, Engagement, and Care Management is a federally-funded project that seeks to provide multidisciplinary coordination and collaboration across medical societies to improve provider education and engagement in the care of patients with Long COVID.

krcoombs — 2025-11-30 15:30:35 UTC

https://cmss.org/programs-and-resources/long-covid-education-engagement-and-care-management/

Amy Proal explains that aging isn’t separate from infection; our bodies accumulate persistent pathogens that hijack metabolism, damage mitochondria, and accelerate aging.

krcoombs — 2025-11-30 20:24:22 UTC

https://www.youtube.com/watch?v=XMcVUrErzeU

Emphasis on continuing research following older adults, and using RECOVER’s observational data & biosamples from older adults to better understand Long COVID progression and related immune and inflammatory responses over time.

krcoombs — 2025-12-03 16:22:52 UTC

https://recovercovid.org/r3-seminar-series/long-covid-older-adults-insights-recover-adult-observational-cohort

Medicaid is the bare minimum for people with Long COVID and other complex conditions. But instead of improving it, amid skyrocketing disability claims, the Trump administration is making it worse.

krcoombs — 2025-12-04 20:18:34 UTC

https://thesicktimes.org/2025/12/02/the-future-of-medicaid-is-really-scary-for-people-with-long-covid/

For the first time in more than 3 decades, the United States did not take part in World AIDS Day on December 1, a major change from past years when the day was used to raise awareness about HIV/AIDS and honor the millions of people lost to the disease.

krcoombs — 2025-12-05 03:09:14 UTC

https://www.clinicaladvisor.com/news/us-skips-world-aids-day-for-the-first-time-in-37-years/

“Alice fought like hell to exist in her body and mind every day,” said Hernandez-Wilson, who works for a nonprofit that advocates for domestic workers and caretakers. “There is a larger system at play that dictates if we are worthy enough of getting care.”

krcoombs — 2025-12-09 03:45:32 UTC

https://www.kqed.org/news/12065192/friends-honor-alice-wong-as-disabled-advocates-brace-for-deep-medicaid-cuts

Today, we dive deep into how culture and politics affect our bodies. We explore perceptions of what illness looks like (or doesn’t look like). And what it takes for a patient to become an advocate, both for themself and for others.

krcoombs — 2025-12-12 14:38:51 UTC

https://www.ctpublic.org/show/where-we-live/2025-12-11/whats-it-like-to-live-with-a-chronic-illness

Dr. David Putrino presents the latest findings from a trial investigating auricular vagus nerve stimulation. Dr. Avindra Nath discusses the current scientific understanding of neurological complications in Long COVID and reviews potential therapeutic strategies.

krcoombs — 2025-12-17 21:17:57 UTC

https://www.youtube.com/watch?v=g9mfDyUZq_s

"I hope this holiday, instead of simply powering through, you choose to let folks in and create opportunities for healing and wholeness by sharing your pain."

krcoombs — 2025-12-19 02:20:43 UTC

https://www.essence.com/lifestyle/grief-during-the-holidays/

Researchers within and outside RECOVER can apply for 2 opportunities to study the survey data presented during the webinar.

krcoombs — 2025-12-19 16:26:45 UTC

https://recovercovid.org/r3-seminar-series/using-recover-data-advance-your-research

Among the 10% of participants who met research index criteria for Long COVID at 3 months, 46% were in the persistent Long COVID group, 35% continued to have intermittent Long COVID-related symptoms, and 19% were in the group that was improving over time. N= 4323

krcoombs — 2025-12-19 16:39:10 UTC

https://recovercovid.org/index.php/publications/long-covid-trajectories-prospectively-followed-recover-adult-us-cohort

Reporting from the 2025 IACFS/ME Annual Conference, Dr. Ziyad Al-Aly's message was clear—long COVID isn’t going away. It’s real, it’s widespread (over 400 million people), and it’s changing how we understand chronic illness.

krcoombs — 2025-12-19 17:46:53 UTC

https://www.youtube.com/watch?v=imr0GMHNSaE&t=1s

"I fell into this trap myself trying to go back to exercise far too soon, far too intensely every time. But I learned the lessons because it laid me up in bed for days afterwards. So we have this post-exertional malaise which occurs if we are not up to the task.”

krcoombs — 2025-12-21 02:40:33 UTC

https://www.cyclingweekly.com/fitness/long-covid

Short summaries on the latest research on COVID and other Health News from end of 2025.

krcoombs — 2026-01-05 18:03:02 UTC

https://drruth.substack.com/p/part-ii-research-news-142026

The review identified the main symptom patterns associated with long COVID, including neurologic, respiratory, olfactory and/or gustatory, cardiopulmonary, and fatigue. N=2.4M

krcoombs — 2026-01-05 23:38:13 UTC

https://www.cidrap.umn.edu/covid-19/study-outlines-recurring-symptom-clusters-define-long-covid

The multi-center, observational study found that the risk of long COVID was significantly higher in households that faced food insecurity and challenges such as low social support and high levels of discrimination. N=4584

krcoombs — 2026-01-06 02:33:32 UTC

https://www.massgeneralbrigham.org/en/about/newsroom/press-releases/long-covid-in-children-tied-to-adverse-food-social-conditions

The findings of an association between adverse social determinants of health and greater likelihood of pediatric long COVID suggest that addressing adverse social drivers may mitigate future disease risk. N=4584

krcoombs — 2026-01-06 02:35:44 UTC

https://jamanetwork.com/journals/jamapediatrics/article-abstract/2843098#250727383

A three-judge panel of the Boston-based 1st U.S. Circuit Court of Appeals upheld, opens new tab an injunction secured by 22 Democratic state attorneys general, medical associations and universities after determining the funding cuts NIH announced in February 2025 were unlawful.

krcoombs — 2026-01-06 03:02:21 UTC

https://www.reuters.com/world/trump-administration-cannot-slash-nih-research-funding-court-rules-2026-01-05/

These findings highlight the need for ongoing assessments for children born during the COVID-era. N=142

krcoombs — 2026-01-06 03:09:16 UTC

https://www.sciencedirect.com/science/article/pii/S0889159125004805

While lawmakers created the fund in part to help offset the impact on rural hospitals of cuts under the reconciliation law, CMS has made clear that funding is intended to benefit rural communities more broadly by transforming health care systems.

krcoombs — 2026-01-07 03:27:31 UTC

https://www.kff.org/state-health-policy-data/first-year-rural-health-fund-awards-range-from-less-than-100-per-rural-resident-in-ten-states-to-more-than-500-in-eight/

Science is our best tool for creating the America that all citizens want: one that is safe, secure, and gives everyone the opportunity to thrive. And yet, the scientific community is facing challenges unlike anything I have seen in my lifetime.

krcoombs — 2026-01-08 02:17:01 UTC

https://www.pnas.org/doi/10.1073/pnas.2535307123?_hsenc=p2ANqtz--U-U8XpSfY6lOIHealPwks_iZr2R8wCYtLvh0XAIxJ0j-b-qVwh8XIelNGdlJB3K6Hnz6oAJhvHDrUGXXOPw8Hm748Hw

Even after the COVID-19 public health emergency ended in May 2023, the virus continued to cause millions of illnesses and more than 100,000 deaths annually from October 2022 to September 2024, with the majority of severe outcomes and deaths concentrated among older adults.

krcoombs — 2026-01-08 02:28:51 UTC

https://www.cidrap.umn.edu/covid-19/covid-continues-exact-heavy-toll-older-us-adults-study-suggests

We talk with medical anthropologist Emily Mendenhall about her new book, "Invisible Illness: A History, from Hysteria to Long COVID." 45 min

krcoombs — 2026-01-08 22:08:27 UTC

https://www.upr.org/show/access-utah/2026-01-07/failures-of-practice-and-research-regarding-invisible-illness-on-access-utah

I want to stand up for our group because I can. Working with these stories and drawings gives me meaning. I don't want to be pitied, I don't want pity. I just want it to get attention. Fortunately, there are doctors and people who fight for us, but unfortunately, they're scarce."

krcoombs — 2026-01-09 02:35:43 UTC

https://www.linda.nl/lifestyle/gezondheid/nicole-van-keulen-long-covid/

Experts are urging guideline changes on what health professionals should wear to protect against flu-like illnesses including Covid

krcoombs — 2026-01-09 14:28:33 UTC

https://www.theguardian.com/global-development/2026/jan/09/health-professionals-respirator-grade-masks-who-advise?CMP=oth_b-aplnews_d-1

Archive 2025

krcoombs — 2026-01-09 16:05:56 UTC

https://padlet.com/krcoombs/breakout-room/x1rD2JLnjamlv0dM-k2qlv362aVeNX5Rx

“Fundamentally, the ME/CFS patient’s response to exercise is very different and very impaired….These are objective changes in the bodies of these patients that correspond with what the patients are saying,”

krcoombs — 2026-01-09 16:36:14 UTC

https://www.medscape.com/viewarticle/multiple-abnormal-responses-exertion-seen-me-cfs-2026a10000q1

Archive: Research Papers/Analysis 2025

krcoombs — 2026-01-09 18:52:15 UTC

https://padlet.com/krcoombs/breakout-room/E1Xd49kBj3dLqGJr-5YprXgo4draAXlJ0

A stable research funding infrastructure is essential to solve the country’s health challenges and to support a functional democracy where policy is based on evidence.

krcoombs — 2026-01-10 15:16:58 UTC

https://www.statnews.com/2026/01/10/nih-resign-protest-four-leaders-cite-interference-censorship/

“We know it’s devastating. We know a large proportion of the population is affected. Despite that, we’re doing nothing, or very little.”

krcoombs — 2026-01-11 02:15:20 UTC

https://www.medscape.com/viewarticle/healthcare-workers-long-covid-struggle-find-support-and-care-2026a10000qv?ecd=WNL_trdalrt_pos1_260110_etid8020734&uac=123390EZ&impID=8020734

Archive Research/ Analysis Nov 2024-April 2023

krcoombs — 2026-01-12 13:41:48 UTC

https://padlet.com/krcoombs/breakout-room/YQjo4KGpby8r4DwL-aW0BzoKOZKAqzwl6

Archive International Coverage 2025

krcoombs — 2026-01-12 14:47:30 UTC

https://padlet.com/krcoombs/breakout-room/PkpnqAGleVJ4D0By-MV5obMEE3NGbD8e9

Archive US State and Local Coverage 2025

krcoombs — 2026-01-12 14:57:14 UTC

https://padlet.com/krcoombs/breakout-room/J7z0qjGeopjvmWQK-MV5obMEE3NGbD8e9

Morales attributes that to underdiagnosis and lack of awareness. “We need more research,” he said. “Clearly, we need better treatment. We need better tests, and I think we need to continually worry about access to care.”

krcoombs — 2026-01-12 15:03:28 UTC

https://www.yakimaherald.com/news/northwest/researchers-find-more-long-covid-than-expected-in-wa-hispanics/article_0d18c43c-95dc-5346-8d41-262157abcccc.html

Long COVID and Postacute COVID-19 vaccination syndrome share symptom overlap but exhibit distinct biomarker patterns, particularly elevated autoantibody levels in PACVS. These findings suggest autoimmune involvement. N=181

krcoombs — 2026-01-13 12:43:35 UTC

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaf624/8417802

This week’s research digs into why recovery can stay messy: signals of persistent inflammation, immune “burnout,” and overlapping mechanisms with ME/CFS —> from metabolism and lipids to the gut microbiome and vascular function.

krcoombs — 2026-01-13 18:51:31 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-166long-covids?

The team detected subgenomic viral RNA inside some T cells, and many infected cells also showed signs of activating antiviral defenses, suggesting the immune system was responding even as the virus spread within it.

krcoombs — 2026-01-14 15:40:33 UTC

https://www.discovermagazine.com/what-cats-are-revealing-about-how-covid-may-linger-in-the-human-immune-system-48535

"In general, medical establishments are pushed to treat simple, manageable conditions over those where treatment options are still developing, and providers are under pressure from their institutions to treat more lucrative diagnoses.”

krcoombs — 2026-01-14 17:49:04 UTC

https://scienceline.org/2026/01/long-covid-clinics-are-quietly-closing-leaving-thousands-of-patients-without-specialized-care/

Ignoring the most severe cases of Long COVID not only hinders our understanding of the disease’s underlying biology but also distorts public perception of its seriousness. It risks diminishing the urgency of funding future Long COVID research, even though the condition already constitutes a major public health crisis.

krcoombs — 2026-01-14 18:13:27 UTC

https://thesicktimes.org/2026/01/13/severe-people-may-hold-answers-to-long-covid-they-must-be-included-in-research/

This study aimed to characterize Neuro-PASC symptom evolution using a mobile phone application and assess user experience. N=63

krcoombs — 2026-01-16 02:27:18 UTC

https://link.springer.com/article/10.1186/s12883-025-04577-8

Long COVID prevalence in the study population was 8.4%. Adults with a family history of cancer were 1.26 times more likely to have Long COVID. N=25,389

krcoombs — 2026-01-16 02:45:21 UTC

https://link.springer.com/article/10.1007/s10552-026-02130-7

The evidence reviewed indicates that SARS-CoV-2 infection may precipitate hippocampal dysfunction through a convergence of astrocytic infection, microglial activation, blood–brain barrier disruption, and impaired neurogenesis.

krcoombs — 2026-01-19 14:58:00 UTC

https://www.sciencedirect.com/science/article/pii/S0022395626000075?via=ihub=

Amatica is (presently) a small organization founded by two long-COVID/ME/CFS patients that is aiming big indeed.

krcoombs — 2026-01-20 01:32:58 UTC

https://www.healthrising.org/blog/2026/01/18/amatica-long-covid-chronic-fatigue-me-cfs/

AU: The newly funded projects will support the development of tools and therapies to enhance support for people living with long COVID.

krcoombs — 2026-01-22 03:36:54 UTC

https://www.nationaltribune.com.au/47-million-for-unsw-researchers-to-investigate-long-covid/

Our paper serves as a roadmap for programs in how to teach about ME/CFS and other related diagnoses, such as Long COVID.

krcoombs — 2026-01-22 04:14:08 UTC

https://batemanhornecenter.org/physical_therapy_must_catch_up/

Paper: https://nsuworks.nova.edu/ijahsp/vol24/iss1/1/

NIH RECOVER webpage refresh: 'What is Long COVID' page has been updated with the latest research; New Studies, New Findings, and Publications pages have been updated for greater access.

krcoombs — 2026-01-22 17:47:19 UTC

https://recovercovid.org/

Studies: https://recovercovid.org/studies

News and Events: https://recovercovid.org/index.php/news

The team discovered a distinctive pattern of these folds that appears only in people with ME/CFS — providing a clear biological “fingerprint” of the disease.

krcoombs — 2026-01-22 23:02:48 UTC

https://www.youtube.com/watch?v=DqRAsy_vqJo

“I don’t think that it is fair in 2026 to say that this disease is a mystery,” Peluso said. “I think we’ve made a lot of progress in understanding objectively what might be happening.”

krcoombs — 2026-01-22 23:43:34 UTC

https://www.ucsf.edu/news/2026/01/431346/solving-long-covid-how-decades-hiv-research-paved-way

"Some of the countries with the most successful strategies recommend testing and self-isolation if you have Covid-19,". He notes that reducing spread means fewer people get sick – and fewer develop long-term effects.

krcoombs — 2026-01-23 04:07:56 UTC

https://www.sciencenorway.no/covid19-long-covid-mental-health/researchers-not-testing-for-covid-19-is-creating-problems/2606109

“But given the significant budget of the RECOVER-TLC program, and the promise of urgency at the outset of the program, I am disappointed. RECOVER-TLC was supposed to correct the mistakes of RECOVER 1.0 — at this point it really feels like more of the same.”

krcoombs — 2026-01-23 21:16:12 UTC

https://thesicktimes.org/2026/01/23/new-recover-tlc-trials-wont-enroll-until-summer-nearly-two-years-after-the-programs-launch/

By accounting for natural and disrupted biorhythms, MELLOW will map temporal links between hormonal, molecular, physiological, and symptom dynamics, improving biomarker reproducibility and clarifying endocrine network disruption underlying ME/CFS, long COVID, and women’s health more broadly.

krcoombs — 2026-01-23 23:33:30 UTC

https://www.nature.com/articles/s44294-025-00120-9

MELLOW study: https://www.omf.ngo/mellow-tracking-hormone-fluctuations-in-me-cfs-and-long-covid/

Both Long COVID and ME/CFS demonstrate dysregulation in cerebrovascular blood flow, autonomic reflexes, and small fiber neuropathy, suggesting that these conditions may share a common underlying pathophysiology. N=676

krcoombs — 2026-01-24 17:25:36 UTC

https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0341278

WHO therefore regrets the United States’ notification of withdrawal from WHO – a decision that makes both the United States and the world less safe.

krcoombs — 2026-01-25 15:42:01 UTC

https://www.who.int/news/item/24-01-2026-who-statement-on-notification-of-withdrawal-of-the-united-states

This review summarizes the recent advances in immunopathogenesis and therapeutic modulation of long COVID, highlighting the scientific rationale for targeted immunotherapy and practical considerations for integrating these approaches into multidisciplinary care.

krcoombs — 2026-01-27 02:45:43 UTC

https://www.pharmacypracticenews.com/Clinical/Immunology/Article/01-26/Immune-Homeostasis-Restoration-In-Long-COVID/79454

This week’s reads zoom in on a few of the most plausible threads: energy metabolism that doesn’t fully bounce back, autonomic dysfunction that looks a lot like ME/CFS, brain connectivity changes that show up under cognitive load, and a gut–immune–brain loop that could help explain persistent neuro symptoms.

krcoombs — 2026-01-27 19:15:28 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-168why-brain-fog

A large prospective cohort study found that a majority of people with Long COVID did not recover. Invivyd is advancing research of a COVID-19 monoclonal antibody called VYD2311. Researchers in Australia are getting more Long COVID funding.

krcoombs — 2026-01-27 22:38:24 UTC

https://thesicktimes.org/2026/01/27/research-updates-january-27/

The strongest predisposing factor for COVID-19 infection was an organic mental disorder, which carried 2.3 times the risk, followed by fungal disease and kidney failure, both posing 1.2 times the risk. N= >16K

krcoombs — 2026-01-27 23:35:24 UTC

https://www.cidrap.umn.edu/covid-19/alzheimer-s-disease-delirium-may-be-risk-factors-covid-infection-requiring-hospitalization

If your patients have been coming in with new asthma-like symptoms or sudden allergies to foods or the environment, long COVID could be to blame.

krcoombs — 2026-01-28 13:09:50 UTC

https://www.medscape.com/viewarticle/new-onset-allergies-another-woe-patients-long-covid-2026a10002ka?src=rss

research: https://www.nature.com/articles/s41590-025-02353-x

Abnormally high levels of lung-injury biomarkers in the blood after COVID-19 infection may flag patients at risk for ongoing lung disease. N=957

krcoombs — 2026-01-29 22:49:09 UTC

https://www.cidrap.umn.edu/covid-19/blood-test-may-identify-covid-survivors-risk-ongoing-lung-disease

.."we must acknowledge the courage it takes to self-report, especially in a system that judges it as inferior to other forms of ascertainment. We must de-stigmatise ‘self-reporting’ particularly for health conditions that are under-recognised, under-researched and disproportionately affected by epistemic injustice."

krcoombs — 2026-01-30 12:26:43 UTC

https://journals.plos.org/globalpublichealth/article?id=10.1371/journal.pgph.0005521&?utm_id=plos111

Long COVID can affect anyone exposed to COVID. Being young and fit doesn’t protect you from long COVID.You don’t need to have been seriously ill – or have a pre-existing condition. Long COVID hasn’t gone away; new infections still lead to cases. It isn’t “a thing of the past”.

krcoombs — 2026-01-30 14:33:33 UTC

https://www.who.int/europe/event/myth-busters--debunking-long-covid-myths-and-misconceptions

People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID experience a disruption to their brain connectivity during a mentally demanding task. N=72

krcoombs — 2026-01-30 17:07:53 UTC

https://news.griffith.edu.au/2026/01/28/altered-brain-connection-found-in-people-with-me-cfs-and-long-covid/

The issue was no longer simply whether babies tested positive at birth, but whether exposure in the womb — through low-level infection, lingering viral fragments or inflammation — could subtly alter development, potentially increasing vulnerability to later neurodevelopmental or psychiatric conditions, with effects that may emerge months or years down the line.

krcoombs — 2026-01-30 17:10:54 UTC

https://www.bloomberg.com/news/articles/2026-01-30/children-s-development-may-be-affected-by-covid-during-pregnancy ?

Governments, health-care systems, and funding bodies must act now by prioritising long COVID as a major medical and research focus, enabling access to care, and ensuring children are not left behind.

krcoombs — 2026-01-30 17:12:05 UTC

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(25)00496-7/fulltext

In the critique I’ve read, the problem is that thinking about these health conditions as anything but having a biological cause and biological treatments may cause people to be dismissed in clinical spaces or prevent scientific discovery.

krcoombs — 2026-01-30 18:52:36 UTC

https://substack.com/home/post/p-185788366

Link to book: https://www.emilymendenhall.com/invisible-illness

But more than two years later, a growing body of research continues to reveal information about the virus and its ability to cause harm long after initial infections resolve, even in some cases when symptoms were mild.

krcoombs — 2026-01-30 19:50:36 UTC

www.cbsnews.com%2Fnews%2Fcovid-long-term-harm-health-policies%2F

Multiple randomized clinical trials and electronic health record studies now show that metformin, a widely used and well-established medication, significantly reduces the risk of developing Long COVID when taken during or shortly after acute infection with SARS-CoV-2.

krcoombs — 2026-02-01 03:28:04 UTC

https://med.umn.edu/news/metformin-shown-prevent-long-covid-across-risk-groups-multiple-randomized-trials

https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciaf700/8444410?login=false

What all of this points to is a biological basis for long COVID in children too, grounded in immune activation and dysregulation, not merely post-viral fatigue or psychosocial stress.

krcoombs — 2026-02-01 16:17:41 UTC

https://danilobuonsenso.substack.com/p/a-pathogenic-monocyte-signature-in?r=a36iw&triedRedirect=tru

Their presentations focused on evidence of SARS-CoV-2 persistence in human tissues and the implications for chronic immune dysfunction and cancer progression.

krcoombs — 2026-02-01 19:03:20 UTC

https://polybio.org/polybio-scientists-present-long-covid-tissue-findings-at-usa-saudi-biotech-alliance-summit/

But Harbinder says she is "hopeful" about a new £1.1m study that will analyse the links between Long Covid and ME, between them thought to affect about 1.3 million children and adults in the UK.

krcoombs — 2026-02-02 13:20:49 UTC

https://www.bbc.com/news/articles/cy8pnggl7zgo

https://meassociation.org.uk/2025/12/driving-discovery-the-me-association-invests-1-1m-into-pioneering-research-programme/

One NIH study will test low-dose naltrexone, while other upcoming trials will test larazotide and taurine.

krcoombs — 2026-02-03 19:46:41 UTC

https://thesicktimes.org/2026/02/03/long-covid-affects-millions-of-children-the-largest-pediatric-trial-so-far-launches-this-year/

Including these disorders as part of neuroimmunology subspecialty is the key to advancing the science and clinical care of this underserved patient population with these complex and disabling conditions.

krcoombs — 2026-02-04 02:08:23 UTC

https://www.dovepress.com/postural-orthostatic-tachycardia-syndrome-myalgic-encephalomyelitischr-peer-reviewed-fulltext-article-ITT

The findings suggest that recovery in nonhospitalized individuals may be slow and incremental, even years after infection. N=130

krcoombs — 2026-02-04 02:09:13 UTC

https://link.springer.com/article/10.1186/s12889-026-26532-z

Felipe Correa da Silva presented: " Brain changes in ME/CFS: post-mortem analyses of neuro-endocrine, microglial and mitochondrial mechanisms"

krcoombs — 2026-02-07 19:20:43 UTC

https://www.youtube.com/watch?v=30DkFAXHjDI

Maryland may soon become the first U.S. state to directly support research and development for Long COVID. The state government is considering a bill to establish a grant and loan program dedicated to the disease.

krcoombs — 2026-02-07 20:07:51 UTC

https://thesicktimes.org/2026/02/06/maryland-considers-long-covid-innovation-bill/

Sallie Rediske discusses pacing with kids and teens, the damages caused by the PACE trial, and what it was like to navigate ME/CFS since childhood--long before she had a diagnosis or language for what she was experiencing.

krcoombs — 2026-02-10 14:58:41 UTC

https://www.youtube.com/watch?v=Vgx4uGzICYU

Research on what digital “energy management” actually does (and doesn’t) change, what specific immune-cell states might be signaling about lung function, and what the broader public conversation is getting right—or getting wildly wrong.

krcoombs — 2026-02-10 16:54:10 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-170-immune-clues?r=a36iw&triedRedirect=true

Discover what the latest science from RECOVER means for our ability to understand, diagnose, prevent, and treat Long COVID.

krcoombs — 2026-02-10 19:18:17 UTC

https://recovercovid.org/research-summaries

MD government is considering a bill that would establish a grant and loan program dedicated to the long COVID, and about "Are Dutch psychologists distancing themselves from graded activity in ME/CFS".

krcoombs — 2026-02-11 13:34:14 UTC

https://virology.ws/2026/02/11/trial-by-error-some-things-ive-read-recently-3/

Incorporating PEM into a new conceptual model of long covid cardiac rehabilitation programmes is essential to clinically distinguish it from cardiovascular deconditioning and to safeguard patients from unintended harm.

krcoombs — 2026-02-12 12:44:31 UTC

https://bjsm.bmj.com/content/early/2026/02/09/bjsports-2025-111387

PEM= Post Exertional Malaise

COVID-19 infection may meaningfully affect male reproductive health, while having limited consequences for female fertility or assisted reproductive technology (ART) outcomes. N=14 studies analyzed.

krcoombs — 2026-02-12 23:50:43 UTC

https://www.cidrap.umn.edu/covid-19/covid-infection-may-impair-male-fertility-vaccination-shows-no-effect-review-suggests

These fragments are produced when the virus breaks down within the body, but instead of being harmless, they continue to attack specific immune cells.

krcoombs — 2026-02-14 19:15:00 UTC

https://indiandefencereview.com/long-virus-leaves-covid-fragments/

Findings suggest potential for targeted interventions supporting regional brain energy metabolism.

krcoombs — 2026-02-15 18:48:55 UTC

https://www.sciencedirect.com/science/article/pii/S088915912600228X

Today, we, patient organizations and advocates living with Long COVID from all over the world, release a collective declaration. 5 years on, millions live with this chronic condition caused by SARS-CoV-2. We demand action, not denial.The erasure of long COVID is a public health failure. Failing to assess the full burden of Long COVID leaves millions behind.

krcoombs — 2026-02-16 02:21:42 UTC

https://longcovidriseup.eu/

The British Columbia Centre for Disease Control suggests that COVID-19 infection is associated with an increased risk of type 2 diabetes in unvaccinated and severely ill patients, with elevated risk persisting for up to 3 years after infection. N= >1.7M

krcoombs — 2026-02-16 21:47:11 UTC

https://www.cidrap.umn.edu/covid-19/risk-type-2-diabetes-may-be-higher-3-years-after-covid-infection-unvaccinated-severely-ill

The best preventative measure is to avoid infection, and vaccination alone cannot achieve this. The second fundamental misconception in the article is the unspoken assumption that infection is inevitable.

krcoombs — 2026-02-16 21:54:14 UTC

https://www.bmj.com/content/392/bmj.s31/rr-1

A 3-year modeling study, plus microRNA, Extracellular Vesicles, and gut–brain research, push toward more precise monitoring.

krcoombs — 2026-02-17 17:49:53 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-171can-we-predict?r

Patients with both severe and nonsevere COVID-19 infections are at higher risk for both new-onset obstructive sleep apnea (OSA) and related serious complications than their uninfected peers. N=910,393

krcoombs — 2026-02-18 01:16:50 UTC

https://www.cidrap.umn.edu/covid-19/covid-survivors-may-be-higher-risk-obstructive-sleep-apnea-45-years-post-infection

Their testing found that 39% of aerosol samples were positive for SARS-CoV-2 RNA. Detection was significantly more common in the ED than in the ICU. N= 51 aerosol samples

krcoombs — 2026-02-18 01:17:56 UTC

https://www.cidrap.umn.edu/covid-19/study-sars-cov-2-rna-found-39-hospital-air-samples-during-outbreaks-despite-good

“If you’re not understanding the accessibility issues inherent because you don’t have a true measure of the population, then you’re not even creating the pathways for participation in democracy,” Anand said.

krcoombs — 2026-02-18 02:42:22 UTC

https://prismreports.org/2026/02/16/disability-data-health-care-accessibility/

Children and adolescents face a significantly higher risk of various PASC outcomes after reinfection with SARS-CoV-2. N= 407 300

krcoombs — 2026-02-18 02:45:08 UTC

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(25)00476-1/fulltext

The Federation draws its strength from the lived experience of people with Long COVID, who face the chronic consequences of COVID and continue, every day and across regions, to confront the pandemic while advocating for the right to health.

krcoombs — 2026-02-19 13:57:13 UTC

https://longcovidriseup.eu/lcriseup-english-version-cp/

It’s a serious physical illness, It’s much more common than you think, It usually doesn’t go away by itself, It can (still)happen to anyone, Getting the right care is very hard

krcoombs — 2026-02-19 15:33:08 UTC

https://covidforeningen.se/wp-content/uploads/5-things-about-long-covid.pdf

https://covidforeningen.se/other-languages/

Schedule of Events: This March, we are taking a special look at the heart and cardiovascular impacts of Covid infections and Long Covid, while also highlighting the many other aspects of this multi-system complex condition.

krcoombs — 2026-02-19 15:40:16 UTC

https://covidsociety.ca/priorities/long-covid/

https://covidsociety.ca/priorities/long-covid/lcad-2026-share/

This study showed that cognitive performance deficits in long COVID patients correlated with disturbances in cerebral blood flow regulation in the microcirculation of capillary networks.

krcoombs — 2026-02-22 04:26:59 UTC

https://academic.oup.com/braincomms/article/8/1/fcag036/8471682?login=false

But interviews with disability rights advocates, clinicians and more than a dozen long Covid patients demonstrated that the systemic barriers for Vermonters with long Covid extend well beyond the Trump administration. They reach into deep-seated divides in health care, ableism and shame over chronic illness in Vermont.

krcoombs — 2026-02-22 16:21:34 UTC

https://vtdigger.org/2026/02/22/six-years-in-long-covid-is-still-with-many-vermonters-and-they-say-the-system-is-failing-them/

These findings demonstrate that early pregnancy SARS-CoV-2 infection correlates with an increased risk of birth defects, underscoring the need for enhanced prenatal monitoring in exposed pregnancies. N= 1,719

krcoombs — 2026-02-23 04:42:58 UTC

https://www.nature.com/articles/s41598-026-39855-z

Despite mounting evidence on Covid’s harms, healthcare guidance is inadequate. (Ireland)

krcoombs — 2026-02-23 04:45:35 UTC

https://www.independent.ie/opinion/comment/tess-finch-lees-from-the-winter-olympics-to-nasa-wearing-masks-is-back-except-when-it-comes-to-our-hospitals/a944827489.html

This week, Lieutenant Governor Dianne Primavera released the fourth annual report on Long COVID in Colorado, synthesizing state-specific data, highlighting recent work, outlining next steps, providing recommendations, and sharing first-hand accounts from Coloradans living with Long COVID.

krcoombs — 2026-02-23 04:46:52 UTC

https://arkvalleyvoice.com/office-of-the-lieutenant-governor-releases-2026-annual-report-on-long-covid/

We took an exploratory approach to examine how self-reported social, professional (i.e., education/work) preference-related, and well-being outcomes of 248 American college students from a Michigan-based university changed across two waves, in 2020/2021 (while in college) and 2025 (after graduation).

krcoombs — 2026-02-24 01:21:23 UTC

https://www.sciencedirect.com/science/article/abs/pii/S0191886925005999?via%3Dihub

Semaglutide reduced risks of infection, Serious Adverse Events, hospitalization due to infection, and all-cause death with greater benefit among those with poorer glycemic control and greater baseline albuminuria. N= 762

krcoombs — 2026-02-24 03:42:52 UTC

https://academic.oup.com/ndt/advance-article/doi/10.1093/ndt/gfag036/8494850?login=false

Care takes time. Quality comes first. Access goes beyond our clinic. Community makes this possible.

krcoombs — 2026-02-24 14:08:34 UTC

https://batemanhornecenter.org/how-care-is-structured-at-bateman-horne-center/

Hypercoagulability, Microclotting, and Blood Issues in ME & LC: Panelists Resia Pretorius, Douglas Kell, Jordan Vaughn, Jill Schofield

krcoombs — 2026-02-24 22:04:52 UTC

https://www.renegade-research.org/2026-03-13-roundtable-hypercoag

Updated risk for sleep apnea, chronic pain, emotional disorders, and new estimates on how long symptoms tend to last.

krcoombs — 2026-02-25 15:30:39 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-172-long-covid?r=a36iw&triedRedirect=true

Local advocates pushed America’s second largest city to formally observe the day on March 15

krcoombs — 2026-02-25 23:32:52 UTC

https://thesicktimes.org/2026/02/25/los-angeles-recognizes-long-covid-awareness-day/

Dr. Khan says it’s critical that we work to restore trust in healthcare – and both patients and physicians have a role to play.

krcoombs — 2026-02-25 23:56:54 UTC

https://fnih.org/patient-engagement/patient-voices-fnih/doctor-gains-perspective-developing-long-covid/

The virus that causes COVID-19 can impact many systems of the body. People with Long COVID can have a variety of symptoms that can last for weeks, months or years after infection.

krcoombs — 2026-02-27 17:24:19 UTC

https://www.healthvermont.gov/wellness/other-chronic-conditions/long-covid

UVM Long COVID Support Group. Facilitated by a licensed clinical social worker, the group welcomes any Vermonter experiencing long COVID.

krcoombs — 2026-02-27 17:27:43 UTC

https://www.uvmhealth.org/classes-and-support-groups/long-covid-support-group

Diagnosing COVID-19, COVID-19 Treatments, Patient Resources

krcoombs — 2026-02-27 17:40:09 UTC

https://www.uvmhealth.org/conditions-specialties/primary-care/covid-19

VT Assistive technology: Creative tools and strategies that help people accomplish tasks at home, school, work, and in the community.

krcoombs — 2026-02-27 17:47:14 UTC

https://atp.vermont.gov/services/try-at

Hireability VT: Our goal is to help you become employed or stay employed. Everything we do together will be designed to help you achieve all of your employment goals.

krcoombs — 2026-02-27 17:49:36 UTC

https://www.hireabilityvt.com/job-seekers/chronic-health-conditions/

VCIL works to promote the dignity, independence, and civil rights of Vermonters with disabilities.

krcoombs — 2026-02-27 17:53:05 UTC

https://www.vcil.org/community-calendar/

Like all CILs: Provide services for all disabilities; promote active citizenship; and work with others to create services that support free-choice and full participation in community life.

This page highlights resources for self-managing long COVID symptoms, as well as treatments and services offered by the Post-Acute COVID-19 Syndrome (PACS) Clinic.

krcoombs — 2026-02-27 17:59:47 UTC

https://www.dartmouth-hitchcock.org/long-covid/treatments-services

Air purifier rebates from Efficiency VT

krcoombs — 2026-02-27 18:01:39 UTC

https://www.efficiencyvermont.com/rebates/list?type=res

The Vermont Mask Collective is a state-wide mutual aid group dedicated to distributing free high quality masks and tests, creating accessible public health resources, and educating and advocating for our communities.

krcoombs — 2026-02-27 18:03:07 UTC

https://vt.maskcollective.org/

The VT P2P program creates lasting partnerships and offers inspiring training opportunities for students, families, and schools.

krcoombs — 2026-02-27 18:27:31 UTC

Home - Vermont Pathways to Partnerships

"I had heavy fatigue, joint pain, muscle pain, and breathlessness. Since then, some of these symptoms have never gone away. In addition, I also started having strange tremors, loss of taste and smell, and so much swelling in my feet that I couldn’t find any shoes that would fit. I knew something was really wrong".

krcoombs — 2026-02-27 18:59:05 UTC

https://www.medscape.com/s/viewarticle/living-long-covid-2025a10002je

This study highlights the prolonged nature of Long COVID as well as the impact on work. N=1153

krcoombs — 2026-02-28 02:05:57 UTC

https://academic.oup.com/ofid/article/13/2/ofag040/8495807?login=false

"We feel really strongly that it's just being swept under the carpet now. There's a real attitude of see no Covid, hear no Covid. We are being left in some kind of void."

krcoombs — 2026-03-02 14:10:27 UTC

https://www.bbc.com/news/articles/c4g29l0dexjo

51% of respondents fell in the “poor” range (0 to 5). 70% said they were still working, and 18% reported being on sick leave. Eighty-three percent experienced mental fatigue, and 86% experienced physical fatigue. Dizziness was reported by 83%, and 55% reported balance disturbances. N=608

krcoombs — 2026-03-03 01:37:07 UTC

https://www.cidrap.umn.edu/covid-19/many-long-covid-remain-job-despite-reduced-ability-work

UK: . The hundreds of thousands of people who are living with the effects of long COVID. It often prevents them from working, and for children, can hugely disrupt their education. But is there sufficient support for those who are suffering?

krcoombs — 2026-03-03 02:44:27 UTC

https://www.youtube.com/watch?v=ay_2M9fI3z8&t=2s

Long COVID remains a significant health and economic burden, resulting in $170 billion in lost wages in the United States alone.

krcoombs — 2026-03-03 16:20:42 UTC

https://www.forbes.com/sites/omerawan/2026/03/02/long-covid---heres-what-to-know-and-the-challenges-ahead/

Consistent with 2020, TMA- and MAS-associated proteins were more highly expressed, and there was a higher CXCL9 response to IFNγ in MIS-C compared to viral infection. N=42

krcoombs — 2026-03-04 17:17:52 UTC

https://pubmed.ncbi.nlm.nih.gov/41622732/

thrombotic microangiopathy (TMA), macrophage activation syndrome (MAS), interferon-γ (IFNγ)

Adults with prepandemic respiratory conditions, including asthma, bronchitis, and recurrent upper respiratory infections, are significantly more likely to develop long COVID after a mild-to-moderate COVID-19 infection.

krcoombs — 2026-03-06 03:04:40 UTC

https://www.cidrap.umn.edu/covid-19/prepandemic-respiratory-illness-tied-increased-risk-long-covid

This week we zoom in on what’s happening inside the immune system and how those discoveries connect to real-world costs, inequities, and policy decisions.

krcoombs — 2026-03-06 15:34:05 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-173-long-covids?

High levels of cytokine interferon gamma (IFN-γ) as a potential biomarker, COVID-19 and flu can impact lungs post-infection, but only COVID-19 caused a significant impact on the brain.

krcoombs — 2026-03-06 15:35:40 UTC

https://thesicktimes.org/2026/03/03/research-updates-march-3/

The research found that the severity and breadth of sensory dysfunctions are influenced by patient age, initial COVID-19 severity and cognitive functions.

krcoombs — 2026-03-06 15:40:51 UTC

https://wexnermedical.osu.edu/mediaroom/pressreleaselisting/covid19-sensory-issues-study

https://link.springer.com/article/10.1186/s12916-026-04726-x

Perhaps the most consistent experience long COVID patients face is the uncertainty that comes with having a medical condition doctors don’t yet fully understand.

krcoombs — 2026-03-06 19:02:31 UTC

https://newhampshirebulletin.com/2026/03/05/a-priest-a-police-officer-and-a-politician-each-is-living-with-long-covid-in-2026/

A Nassau jury awarded $954,000 to an employee, after Stony Brook University Hospital refused her request to primarily work from home due to persistent fatigue from long COVID.

krcoombs — 2026-03-07 22:21:53 UTC

https://www.law.com/newyorklawjournal/2026/02/25/long-covid-sufferer-awarded-nearly-1m-after-employer-refused-to-let-her-work-from-home-/?slreturn=20260319143906

“It’s not mysterious. It’s complex. It’s underdiagnosed. We know a lot about pathophysiology, symptoms, and we have treatments for POTS. It’s only a mystery to people who’ve never heard of it".

krcoombs — 2026-03-07 22:30:59 UTC

https://www.sfgate.com/warriors/article/warriors-kristaps-porzingis-pots-21958082.php

The disease burden of Long COVID is already reshaping our economy.

krcoombs — 2026-03-08 13:48:56 UTC

https://arizonaascent.com/long-covid-long-game-how-arizonas-trials-could-shape-the-next-decade/

"I call it peeling the onion: take care of the autonomic piece, the inflammation piece, and so on, and try to help people feel better. Or you could get to the root cause"

krcoombs — 2026-03-11 12:16:18 UTC

https://www.youtube.com/watch?v=o07Qbt9Ast8&t=1s

We chose the treatments in this guide using a combination of clinical evidence (reviewed up until Nov 2025), observed real-world effectiveness, and experience treating people with Long COVID.

krcoombs — 2026-03-11 17:47:11 UTC

https://www.rthm.com/resources/blogs/long-covid-treatment-guide

Experts examine evolving long COVID definitions, risk factors, diagnosis challenges, vaccine impact, and workforce effects.

krcoombs — 2026-03-11 18:36:56 UTC

https://www.ajmc.com/view/faq-how-long-covid-is-defined-diagnosed-and-managed-in-2026

This week’s research spans national recovery trends, ME/CFS risk, metabolic dysfunction, and a possible new biomarker test.

krcoombs — 2026-03-11 21:28:30 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-174recovery-mecfs?

From June 2023 to September 2025, only 16% to 38% of non-hospitalized US COVID-19 patients aged 65 years and older were given an antiviral prescription, and Patients with at least one underlying condition and rural residents had lower odds.

krcoombs — 2026-03-11 21:34:55 UTC

https://www.cidrap.umn.edu/covid-19/cdc-antiviral-use-low-among-older-covid-outpatients-despite-higher-risk-severe-disease

The Long COVID Repository is intended to serve as a reference for primary care clinicians who face uncertainty and lack of evidence-based information to recognize, diagnose, and treat Long COVID.

krcoombs — 2026-03-12 01:50:43 UTC

https://cmss.org/programs-and-resources/long-covid-resource-repository/

HHS is advancing a disease-agnostic approach to strengthen data systems, clinical networks, and research infrastructure, accelerating measurable progress while preserving the distinctiveness and urgency of Long COVID.

krcoombs — 2026-03-12 16:53:47 UTC

https://www.hhs.gov/longcovid/index.html

Not available: TOPx HHS Sprint for Invisible Illness, Clinician Locator [Coming soon in 2026]

Patient Resources [Coming soon in 2026]

RECENT evidence indicates that COVID-19 liver complications can emerge months after infection, particularly among patients experiencing long-COVID, highlighting the importance of vigilant post-infection monitoring.

krcoombs — 2026-03-13 01:36:35 UTC

https://www.emjreviews.com/en-us/amj/hepatology/news/post-covid-liver-complications-revealed/

SARS-CoV-2 variant type and time since infection influence long-COVID symptoms links Omicron to brain fog and paresthesia, while earlier variants were more likely to cause shortness of breath and loss of smell. Prevalence at 29%, though it dropped to 23% once the Omicron strain started to dominate.

krcoombs — 2026-03-13 03:01:17 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-prevalence-may-vary-covid-19-variant-time-infection

Long Island: Childhood has a timeline, and long Covid does not respect it.If your child has been struggling since a Covid infection — however mild or even asymptomatic — long Covid may be the explanation no one has yet offered.

krcoombs — 2026-03-13 10:46:46 UTC

https://www.liherald.com/stories/hundreds-of-students-are-sick-unseen-left-behind,220921

The RECOVER Initiative recognizes International Long COVID Awareness Day on March 15—a day established by the Long COVID community to increase visibility of the condition, share resources, and educate the public.

krcoombs — 2026-03-13 10:48:15 UTC

https://recovercovid.org/news/honoring-many-lived-experiences-long-covid

Listening for the Long Haul seeks to build a living history of Long Covid and Associated Conditions from Long COVID Justice, and History Moves.

krcoombs — 2026-03-13 19:38:55 UTC

https://www.listeningforthelonghaul.org/resources

https://www.listeningforthelonghaul.org/home

A highly specialized health system is not set up to address multisystem Long COVID. Breakdowns in coordination force patients to manage their own care. Poor coordination results in missed visits, medical oversights, and patient dropout. N= 69

krcoombs — 2026-03-13 19:41:47 UTC

https://www.sciencedirect.com/science/article/pii/S266732152600048X?via%3Dihub

If you are a caregiver of a loved one with ME/CFS, Long COVID, or other debilitating chronic illnesses, you may find it helpful to participate in a support group.

krcoombs — 2026-03-13 19:43:17 UTC

https://www.caregiverwisdom.net/resources

Jason Gale explores what the world is still living with: the hidden toll of Long Covid, the strain on health systems, the rise of chronic illness, the deepening mental health crisis, and the dangerous spread of anti-science extremism. ~60 min

krcoombs — 2026-03-14 15:34:13 UTC

https://www.youtube.com/watch?v=zrgqp7yGFW0

Canada: Events like Long COVID Awareness Month/Day help people know they are not alone and that “thoughtful, committed citizens can change the world.”

krcoombs — 2026-03-14 16:56:00 UTC

https://www.thespec.com/opinion/contributors/covid-health-equity/article_99897284-b9e6-5f12-ad0f-8e74aa814b04.html

NZ: Leading vaccinologist Helen Petousis-Harris says there's not enough awareness of the impact of Covid-19 on overall health.

krcoombs — 2026-03-14 16:57:16 UTC

https://www.thepress.co.nz/nz-news/360963841/repeatedly-getting-covid-doesnt-build-immunity-its-more-accumulating-damage

Long Covid Lives: A graphic series Long Covid Lives is a three-part graphic series which explores the lived experiences of young people living with Long Covid.

krcoombs — 2026-03-14 16:59:28 UTC

https://www.lshtm.ac.uk/research/centres-projects-groups/covid-made-long#lived-experience-resources

Graphic series: https://www.lshtm.ac.uk/media/97546

Guide: https://www.lshtm.ac.uk/media/97541

Glossary: https://www.lshtm.ac.uk/media/97546

Our data provide robust evidence that persistent SARS-CoV-2 Spike protein detection in the gut is not immunologically inert...supporting the hypothesis that retained viral antigen drives chronic immune dysregulation in tissue of Long COVID subjects. N=13

krcoombs — 2026-03-14 17:00:04 UTC

https://www.biorxiv.org/content/10.64898/2026.03.09.707564v1

International Long Covid Awareness Day 2026, March 15: Toronto, Vancouver, Montreal, Calgary

krcoombs — 2026-03-14 17:01:39 UTC

https://covidsociety.ca/priorities/long-covid/events-lcad-2026/

UK: There is a need to build infrastructures that properly integrate formal with informal care in direct response to young people's experiences of Long Covid. N=54

krcoombs — 2026-03-15 00:52:56 UTC

https://onlinelibrary.wiley.com/doi/10.1111/hex.70611

The surge in Guillian-Barré Syndrome (GBS) incidence aligns with broader reports of elevated GBS rates during COVID-19 surges, though mechanistic links may involve immune-mediated pathways rather than direct viral causation.

krcoombs — 2026-03-15 02:15:37 UTC

https://www.nature.com/articles/s41598-026-44136-w

Interview special for Long Covid Awareness Day: The emerging science of infection-associated chronic illness, Overlap with ME, Healthcare system challenges, Why rehab models can fail, Urgent need for better medical education

krcoombs — 2026-03-15 10:48:45 UTC

Interview special for Long Covid Awareness Day

Charities warn it's become an invisible epidemic, and they want those in power to remember affected children when they make decisions in healthcare and education. And without proper data, parents say the economic impact is also being sidelined.

krcoombs — 2026-03-15 12:34:35 UTC

https://www.youtube.com/watch?v=pNwI87a7U_0

Long COVID rates remain high, Reinfection increases the risk of developing Long COVID, People are more susceptible to other infections after having COVID, Long COVID has a major impact on children. Long COVID has a destructive impact on the economy...

krcoombs — 2026-03-15 12:54:59 UTC

https://patientresearchcovid19.com/2026-long-covid-fact-sheet-text-version/

According to research from the University of Washington Latino Center for Health, an estimated 41.2% of agricultural workers report long COVID – one of the highest rates compared to other professions.

krcoombs — 2026-03-15 16:56:58 UTC

https://www.spokesman.com/stories/2026/mar/15/six-years-later-covid-symptoms-linger-for-many-lat/

Today, March 15, is Long COVID Awareness Day and tonight, landmarks from around the world will be lit up teal to bring attention to Long COVID. It has been 6 years since the beginning of the COVID pandemic.

krcoombs — 2026-03-15 17:46:56 UTC

https://drruth.substack.com/p/dr-ruth-report-31526?r=a36iw&triedRedirect=true

"Ultimately, every person with long Covid deserves to be counted, believed and cared for. Awareness is only the first step."

krcoombs — 2026-03-17 00:27:33 UTC

https://www.thinkglobalhealth.org/article/england-closes-several-long-covid-clinics-deserting-patients

This is the next in a series of blogs on potentially groundbreaking ME/CFS, long-COVID, and/or fibromyalgia studies that are underway.

krcoombs — 2026-03-17 16:27:09 UTC

https://www.healthrising.org/blog/2026/03/16/whole-genome-me-cfs-long-covid-sequence/

Around the world, people with Long COVID recognized International Long COVID Awareness Day with events, demonstrations, and buildings lit up in teal. Austin, Texas, is the latest city to recognize the day, through a proclamation from the Austin city council — a major step in the state.

krcoombs — 2026-03-17 18:17:54 UTC

https://thesicktimes.org/2026/03/17/austin-recognizes-long-covid-awareness-day-events-happen-around-the-world/?mc_cid=64f4f7af74&mc_eid=783aa51ef5

A large cohort study mapping out who’s most at risk, new immune findings, a practical treatment guide that’s finally reaching clinicians, research on pediatric long COVID, early respiratory markers, and a grassroots effort to understand how the condition is affecting Indigenous communities.

krcoombs — 2026-03-18 22:20:12 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-175-whos-most-at?

Long COVID symptoms continue to persist after ancestral SARS-CoV-2 infection in a substantial proportion of Health Care Workers. (Longitudinal Swiss research through Nov 2024)

krcoombs — 2026-03-19 04:07:47 UTC

https://link.springer.com/article/10.1007/s15010-026-02768-0

Long COVID Education, Engagement, and Care Management is a federally-funded project that seeks to provide multidisciplinary coordination and collaboration across medical societies to improve provider education and engagement in the care of patients with Long COVID

krcoombs — 2026-03-19 19:24:15 UTC

https://cmss.org/programs-and-resources/long-covid-education-engagement-and-care-management/

Long Covid advocacy groups today responded to the UK Covid-19 Inquiry’s Module 3 report on healthcare systems, saying its findings provide important validation for the experiences of the millions of people living with Long Covid.

krcoombs — 2026-03-20 02:56:20 UTC

https://www.longcovidsos.org/post/covidinquiryhealthcarepr

We review this body of literature and why metformin should now be offered to outpatient adults for treating acute SARS-CoV-2 infection to prevent long COVID.

krcoombs — 2026-03-20 12:26:59 UTC

https://academic.oup.com/cid/article/82/3/e433/8444410

“Full recovery from long COVID remains uncertain for many patients, and functional limitations persist. Health Care Workers need occupational health strategies to support sustainable reintegration and minimize the loss of the essential workforce.”

krcoombs — 2026-03-20 21:11:19 UTC

https://www.cidrap.umn.edu/covid-19/60-health-care-workers-may-have-long-covid-4-years-after-infection

Females, individuals aged 35 to 64 years, and those with low household income had higher odds of reporting long COVID, the researchers found, and recovery remained less likely among adults aged 35 years or older. N= 24,376

krcoombs — 2026-03-21 22:02:33 UTC

https://jamanetwork.com/journals/jama/fullarticle/2846856

High-dimensional cytometry reveals a distinct immune profile for Long COVID patients. N=45

krcoombs — 2026-03-22 00:09:06 UTC

https://www.journalofinfection.com/article/S0163-4453(26)00056-3/fulltext

Advance the basic science of airborne transmission, invest in next-generation air-cleaning technologies, bridge the gap between R&D and real-world deployment.

krcoombs — 2026-03-22 20:22:38 UTC

https://ssir.org/articles/entry/airborne-disease-paradigm-shift

In the early days, the virus posed a graver threat to people and the health care system. Trump embraced lockdowns he now blasts, and the benefits of vaccines were oversold. (paywall)

krcoombs — 2026-03-23 01:16:38 UTC

https://www.washingtonpost.com/health/2026/03/22/covid-pandemic-misconceptions/

On March 15, International Long Covid Awareness Day, the Canadian Covid Society/Société calls on governments to act on mounting evidence that Covid-19 infection increases the risk of heart attack, stroke, arrhythmia, and permanent cardiovascular damage.

krcoombs — 2026-03-23 15:07:45 UTC

https://covidsociety.ca/news/lcad-2026/

Long COVID affects millions in the United States and increases healthcare needs. Health departments play a crucial role in surveillance, communication, and education to reduce stigma and improve care.

krcoombs — 2026-03-23 15:51:23 UTC

https://www.cdc.gov/long-covid/php/scientific-approach/

Resources for LC: Support Groups, Caregivers, Disability, Employers and Workers, Definition, Overviews, NIH RECOVER

krcoombs — 2026-03-23 15:58:56 UTC

https://www.cdc.gov/long-covid/resources/

Numerous studies point to ways in which SARS-CoV-2 infection can damage the reproductive system, including declines in ovarian health and increased risk for premature menopause. However, it is not clear how or if Long COVID itself impacts fertility.

krcoombs — 2026-03-24 17:45:15 UTC

https://thesicktimes.org/2026/03/24/it-felt-like-a-life-or-death-choice-pregnancy-with-long-covid-has-many-unknowns/

With the rise of new tools in molecular biology, it’s becoming clear that viruses and other pathogens can remain in the body or otherwise affect its workings for a surprisingly long time.

krcoombs — 2026-03-25 18:57:29 UTC

https://time.com/article/2026/03/25/post-viral-symptoms-common/

As BA.3.2 mutations in the spike protein could reduce protection from a vaccination or infection, and new research confirms earlier studies that have also found no link between COVID vaccinations and sudden death in young people.

krcoombs — 2026-03-25 22:33:28 UTC

https://www.cidrap.umn.edu/covid-19/new-covid-variant-immune-escape-potential-confirmed-us-22-other-countries

US cuts to global health funding, alterations to childhood vaccination schedule, and pull back from pandemic preparedness create the risk of multiple, international infectious disease outbreaks and therefore amount to a public health emergency of international concern.

krcoombs — 2026-03-26 00:32:21 UTC

https://www.bmj.com/content/392/bmj-2026-089474

NIH and NIAID leaders propose a shift toward infectious diseases and immunology, increased recognition.

krcoombs — 2026-03-26 01:15:14 UTC

https://bit.ly/47kH4EN

NIH's new plan provides a comprehensive roadmap to advance innovative, responsible research that promotes the health and well-being of Americans with disabilities, and recognizes that disabled Americans have health needs and goals both related and unrelated to their disabilities.

krcoombs — 2026-03-26 18:09:33 UTC

https://dpcpsi.nih.gov/disabilityhealthresearch/strategicplan

By analyzing individual immune cells, they identified a distinct molecular state in key white blood cells—especially common in patients who initially had mild or moderate COVID.

krcoombs — 2026-03-26 18:15:52 UTC

https://www.sciencedaily.com/releases/2026/03/260325005922.htm

A growing body of evidence suggests that Long COVID (or post-COVID syndrome), a condition affecting more than 10 percent of people after a SARS-CoV-2 infection, may be driven by the immune system turning against the body.

krcoombs — 2026-03-26 18:16:47 UTC

https://research.umcutrecht.nl/news/autoantibodies-implicated-in-long-covid-study-finds/

The C19-YRSm is a valid, reliable, and practical biopsychosocial assessment of long COVID, providing a condition-specific alternative to generic rehabilitation measures, and offers clinical advantages through its brief completion time and simplified scoring.

krcoombs — 2026-03-26 18:19:13 UTC

https://www.sciencedirect.com/science/article/pii/S1836955326000147

Treatment Database: Evidence-based and investigational interventions for Long COVID, ME/CFS, POTS, MCAS, and related conditions.

krcoombs — 2026-03-26 18:53:13 UTC

https://www.thespooniverse.org/treatments

What's Inside the Spooniverse

A growing set of tools and resources, all in one place.

Women have suffered from the consequences of a patriarchal and racist healthcare system long enough.

krcoombs — 2026-03-27 16:49:51 UTC

https://uptonrebecca.substack.com/p/the-history-of-hysteria-and-medical?r=a36iw&triedRedirect=true

H.Res.1136 - Supporting the goals and ideals of "Long COVID Awareness Month". Rep. Foushee, Valerie P. [D-NC-4] (Introduced 03/25/2026)

krcoombs — 2026-03-28 03:09:54 UTC

https://www.congress.gov/bill/119th-congress/house-resolution/1136/text

Sen. Ginny Lyons, D-Chittenden Southeast, who chairs the committee, told the women that their experiences would inform the committee’s conversations with insurers, the Vermont Department of Health, the Vermont Department of Labor and others.

krcoombs — 2026-03-28 14:12:35 UTC

https://vtdigger.org/2026/03/27/vermonters-with-long-covid-look-to-senators-for-reform/

In fact, the variant has attracted a lot attention lately, to the point that the March 19 Centers of Disease Control and Prevention’s Morbidity and Mortality Weekly Report included a report on the BA.3.2 variant.

krcoombs — 2026-03-29 14:34:19 UTC

https://www.forbes.com/sites/brucelee/2026/03/28/cdc-report-calls-ba32-covid-19-variant-dubbed-cicada-a-new-lineage/

COVID research: Inflammation spilling over from infected airway cells, PLpro is a key driver of COVID-related tissue injury beyond viral replication, SARS-CoV-2 envelope protein, may hijack mucosal epithelial cells, iron buildup that could help coronaviruses to replicate.

krcoombs — 2026-03-30 01:53:19 UTC

https://drruth.substack.com/p/dr-ruth-report-3292026?r=a36iw

This all leads me to ask, how many people at UConn are struggling with long COVID and are not heard or not believed? How many people are surviving because of UConn’s expansive insurance and would struggle if they lost it?

krcoombs — 2026-03-31 11:14:32 UTC

https://ctmirror.org/2026/03/27/long-covid-vs-uconns-ga-health-insurance/

New website receives mixed reviews from Long COVID advocates and researchers; some do not expect to see any meaningful support from the Trump administration.

krcoombs — 2026-03-31 17:07:09 UTC

https://thesicktimes.org/2026/03/31/not-a-whole-lot-of-substance-hhs-posts-long-covid-website-six-months-after-making-big-promises/

Disability accounts for most Long COVID disease burden, with women most affected. Yet the US lacks data on Long COVID’s disability burden and relative research funding, compared with other conditions.

krcoombs — 2026-04-01 02:41:48 UTC

https://www.nature.com/articles/s43856-026-01516-7

These findings highlight the importance of large longitudinal studies to delineate shared versus unique inflammatory pathways to guide potential long COVID therapeutic strategies. N=557

krcoombs — 2026-04-01 03:16:04 UTC

https://academic.oup.com/jid/advance-article-abstract/doi/10.1093/infdis/jiag146/8566123?

Whereas raising the importance of long COVID awareness in Vermont is of the utmost urgency, now, therefore, be it. That the Secretary of State be directed to send a copy of this resolution to the Vermont Commissioner of Health

krcoombs — 2026-04-01 16:18:58 UTC

https://legislature.vermont.gov/Documents/2026/Docs/RESOLUTN/SCR008/SCR008%20As%20adopted%20by%20the%20Senate%20Official.pdf

Page 49: Vermont, Page 26: Mass, Page 34: New Hampshire, Page 37: New York

krcoombs — 2026-04-02 01:01:58 UTC

https://batemanhornecenter.org/state-by-state-resource-directory/

In the future, CoRE is considering “pairing CME-accredited presentations with non-CME presentations so that we can be a bit more open about discussing pragmatic tips and clinical pearls for providers that are not yet part of formal guidelines or [Food and Drug Administration] approved.”

krcoombs — 2026-04-02 01:26:53 UTC

https://thesicktimes.org/2026/03/30/california-clinicians-gather-for-long-covid-forum-recent-guides-offer-direction/

CoRE insights: https://neuroimmuneinstitute.org/wp-content/uploads/2025/05/David-Putrino-IBDC-2025-Slides.pdf

The team found that a high viral load for EBV was a direct risk factor for developing Hodgkin's lymphoma later in life. However, the same relationship was not found between EBV and multiple sclerosis (MS), even though EBV is a known trigger for MS. N= 917K

krcoombs — 2026-04-02 01:42:18 UTC

https://www.sciencealert.com/giant-study-reveals-why-some-viruses-hide-inside-your-body-for-life

Vaccine-hesitant older adults were more willing to accept hypothetical COVID shots when they were described as way to preserve their freedom and autonomy rather than as an action that complies with government recommendations, a new study finds. N=907

krcoombs — 2026-04-03 00:48:55 UTC

https://www.cidrap.umn.edu/adult-non-flu-vaccines/describing-vaccines-terms-freedom-can-lead-some-hesitant-older-adults-accept

Actress Hermione Norris has disclosed her battle with long Covid, a condition that left her questioning her physical capabilities.

krcoombs — 2026-04-03 01:41:54 UTC

https://archive.md/VKZgk

Program will validate diagnostic tests for SARS-CoV-2 persistence and other drivers of Long COVID, providing a path to more targeted treatments

krcoombs — 2026-04-03 02:37:20 UTC

https://www.biospace.com/press-releases/viper-diagnostics-program-launches-as-first-phase-of-polybio-long-covid-cure-initiative

Long COVID is associated with increased risk of incident cardiovascular disease, particularly cardiac arrhythmias, heart failure, and coronary artery disease. N= 1,217,693

krcoombs — 2026-04-03 13:14:40 UTC

https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(26)00093-3/fulltext

Blending personal stories, public health data, and clinical insights, this session will examine emerging challenges, current responses, and persistent gaps in care.

krcoombs — 2026-04-03 15:21:17 UTC

https://www.youtube.com/watch?v=jDKOaPow-c8

Fla: “Long COVID is very real and very debilitating." “It continues to not only exist, but grow in numbers because every time you get COVID, you’re at risk of having a post-COVID consequence.” said Dr. Nancy Klimas

krcoombs — 2026-04-03 17:51:19 UTC

https://archive.ph/cKSaC

It’s not possible to make the magnitude of cuts to health care that were passed in H.R. 1 and not see effects on the ground on health coverage, the ability of rural health clinics and hospitals to stay open, and access to quality health services. Share

krcoombs — 2026-04-03 18:11:47 UTC

https://ccf.georgetown.edu/2026/03/31/states-are-beginning-to-grapple-with-federal-medicaid-cuts-impact-on-rural-health-care/

Infants born to mothers who received mRNA COVID-19 vaccination during pregnancy had a 36% lower risk of COVID–related hospital contact in their first 6 months of life, and the protective effect did not extend to other infections. N=146 031

krcoombs — 2026-04-04 01:57:50 UTC

https://www.cidrap.umn.edu/covid-19/maternal-covid-vaccination-tied-fewer-infant-covid-hospital-visits

The antidepressant fluvoxamine delivered clinically relevant reductions in long COVID fatigue, but the diabetes drug metformin didn't outdo placebo, according to the randomized REVIVE-TOGETHER trial.

krcoombs — 2026-04-05 12:38:34 UTC

https://www.medpagetoday.com/infectiousdisease/longcovid/120567

The Brain Inflammation Collaborative has developed a survey on our online health platform, the Unhide Platform, which uniquely compares different symptoms that are commonly reported by patients with illnesses such as PANS, Long COVID, ME/CFS and/or Chronic Lyme disease.

krcoombs — 2026-04-05 16:10:31 UTC

https://www.youtube.com/watch?v=-q66fb0UW7g

M.E. Beth, quieter but further reaching, co-founded the advocacy organization #MEAction, transforming an angry, chaotic patient community into a coordinated force for change.

krcoombs — 2026-04-05 17:26:03 UTC

https://www.nytimes.com/2026/04/03/style/modern-love-myalgic-encephalomyelitis-chronic-fatigue-syndrome.html?

The results show that the risk of conditions such as cardiac arrhythmias and coronary artery disease is higher even among those who were not hospitalized during the acute infection.

krcoombs — 2026-04-05 18:04:17 UTC

https://medicalxpress.com/news/2026-04-covid-cardiovascular-disease.html

These findings suggest that the comorbid POTS phenotype in ME/CFS may be associated with innate immune activation and platelet-mediated inflammation. N=31

krcoombs — 2026-04-05 18:21:57 UTC

https://www.nature.com/articles/s41598-026-46965-1

A new poll from the Pew Research Center shows that Americans most often turn to health care providers for accurate medical advice, with only 36% saying they have used social media or artificial intelligence (AI) chatbots (22%) to gather health information. N=1007

krcoombs — 2026-04-08 00:28:14 UTC

https://www.cidrap.umn.edu/public-health/polls-show-most-americans-still-prefer-providers-ai-health-advice

Overall, 57% reported new-onset ocular symptoms—which were defined as blurred or lost vision, dry eyes, or floaters or flashes—after their initial COVID-19 infection. N= 595

krcoombs — 2026-04-09 00:22:16 UTC

https://www.cidrap.umn.edu/covid-19/eye-symptoms-may-signal-higher-severity-long-covid

Long COVID could cost OECD health systems up to 11 billion dollars each year. Few countries have a national plan or strategy in place to address long COVID. Countries face multiple challenges in addressing the burden of long COVID.

krcoombs — 2026-04-09 02:08:30 UTC

https://www.oecd.org/en/publications/addressing-the-costs-and-care-for-long-covid_87a0c171-en/full-report/long-covid-is-a-lasting-burdensome-consequence-of-the-pandemic_60d963d2.html

Members: https://www.oecd.org/en/about/members-partners.html

Over time, the volume has remained significant, but the nature of the cases has shifted. We now see a steady stream of patients, many of whom had milder initial infections but are now struggling with debilitating, long-term symptoms that have persisted for months or even years.

krcoombs — 2026-04-09 18:06:48 UTC

https://www.healio.com/news/primary-care/20260408/qa-lessons-in-long-covid-management

Healio CME is an online continuing medical education platform funded by the Wyanoke group

Stellate ganglion blocks — numbing injections into neck nerves — restored smell and taste for 75 percent of long Covid patients. N=195

krcoombs — 2026-04-10 00:27:34 UTC

https://magazine.tcu.edu/endeavors-2026/long-covid-smell-treatment/

This workshop will bring together leading researchers to discuss emerging science across areas, including shared biological pathways, genetic drivers, the role of persistent infections, how case definitions shape research and healthcare.

krcoombs — 2026-04-10 00:51:56 UTC

https://www.actionforme.org.uk/prime-workshop-2/

The problem is not insufficient expertise; it is insufficient integration.

krcoombs — 2026-04-10 01:46:39 UTC

https://sciencepolitics.org/2026/04/06/what-long-covid-reveals-about-fragmented-care/

Women with long COVID had more than double the risk of developing cardiovascular disease compared with women without long COVID.

krcoombs — 2026-04-10 01:47:04 UTC

https://theconversation.com/long-covid-associated-with-higher-risk-of-heart-disease-279883

"In fact, we must strive towards learning so that we can improve upon this horrible situation. I just want you to know we here at CIDRAP promise you that even if long COVID isn't discussed in every episode, we are thinking of you each and every week."

krcoombs — 2026-04-10 02:23:20 UTC

https://www.cidrap.umn.edu/episode-206-what-we-know-about-long-covid

Federal Medicaid Changes: Vermont Impact. Last updated 4/3/26, New rules will change how people apply for and stay enrolled in Vermont Medicaid, and will affect some adults aged 19-64 and certain immigrants.

krcoombs — 2026-04-10 15:21:14 UTC

Last update 4/3/26

The Federal Government has passed a new law that brings a wide range of changes to Medicaid. New rules will change how people apply for and stay enrolled in Vermont Medicaid. The new rules will affect some adults aged 19-64 and certain immigrants.

Vermont’s HCA HelpLine is a free resource available to help all Vermonters solve health care problems. Help with eligibility, applications, and what is covered for free and lower-cost programs and health care, help resolve billing problems, and file complaints.

krcoombs — 2026-04-10 15:30:20 UTC

https://vtlawhelp.org/health#:~:text=About%20This%20Website,Vermont%20%E2%80%94%20Working%20Together%20for%20Justice.

In a letter last month urging federal officials to fund research into “long COVID,” U.S. Rep. Pete Stauber revealed he dealt for years with the chronic condition, which can leave patients with debilitating symptoms well after a coronavirus infection.

krcoombs — 2026-04-11 03:01:30 UTC

https://www.twincities.com/2026/04/05/minnesota-congressman-says-he-suffered-from-long-covid/

These findings suggest that Choroid Plexus differences in long COVID are associated with AD‐related cognitive decline and increased plasma biomarkers. N=179

krcoombs — 2026-04-11 17:46:55 UTC

https://pmc.ncbi.nlm.nih.gov/articles/PMC12856380/

choroid plexus: implicated in inflammation and supports the clearance of waste byproducts, particularly those related to the pathogenesis of Alzheimer’s disease.

Because GLP-1 RAs may also help reduce inflammation and immune dysregulation, RECOVER-TLC plans to study them as possible treatments for a variety of Long COVID symptoms.

krcoombs — 2026-04-11 17:47:46 UTC

https://recovercovid.org/news/recover-tlc-announces-public-comment-period-upcoming-clinical-trial

SARS-CoV-2 directly infects the cochlea in K18-ACE2 mice, induces apoptosis in spiral ganglion neurons (SGNs), and Spike protein drives SGN apoptosis via stress granule dysregulation.

krcoombs — 2026-04-13 11:24:52 UTC

https://www.cell.com/cell-reports/fulltext/S2211-1247(26)00329-3

These cases highlight an interesting pattern of coronary microvascular dysfunction in post-COVID patients. N=3

krcoombs — 2026-04-13 11:28:27 UTC

https://www.jacc.org/doi/10.1016/j.jaccas.2026.107508

Long COVID-associated cardiovascular manifestations, intranasal Anti-CD3 antibody treatment attenuates Post-COVID Neuroinflammation, far higher levels of platelet-monocyte aggregates (PMA) than healthy controls, and more...

krcoombs — 2026-04-13 11:34:32 UTC

https://drruth.substack.com/p/dr-ruth-report-41226?r=a36iw&triedRedirect=true

The free RTHM and Patient-Led Research Collaborative Long COVID Treatment Guide is one of those publications that makes you wonder, “Why hasn’t this been done before?”

krcoombs — 2026-04-15 01:25:48 UTC

https://www.healthrising.org/blog/2026/04/06/rthm-plrc-long-covid-treatment-guide/

"I realized attitudes around conditions like Long COVID were not likely to change until these greater forces did, and I found Alice and the Disability Visibility Project at the front lines fighting to make that happen."

krcoombs — 2026-04-15 01:28:33 UTC

https://thesicktimes.org/2026/04/10/alice-wong-showed-us-disability-justice-makes-our-advocacy-stronger/

Our results reveal altered T and natural killer cell subset proportions, diminished proliferating lymphocyte and B cell signalling capacity, and the expression of exhaustion and cytotoxicity associated genes 1.5–2 years post-infection, suggesting incomplete immune recovery.

krcoombs — 2026-04-15 19:44:37 UTC

https://link.springer.com/article/10.1186/s12967-026-08081-6

Identified infrequent instances of SARS-CoV-2 infection in both villous and decidual tissues. Infection substantially perturbed the placental immune milieu and trophoblast dynamics. N=761

krcoombs — 2026-04-15 21:49:42 UTC

https://www.nature.com/articles/s41467-026-71770-9

These findings identify nasal administration of aCD3 mAb as a noninvasive strategy to control neuroinflammation, restore the neurogenic niche, and offer a novel approach to treating cognitive impairment in Long COVID.

krcoombs — 2026-04-16 01:57:08 UTC

https://www.researchgate.net/publication/403646405_Intranasal_Anti-CD3_Antibody_Treatment_Attenuates_Post-COVID_Neuroinflammation_and_Enhances_Hippocampal_Neurogenesis_and_Cognitive_Function_in_Mice

Both in vitro and in vivo studies demonstrate that this viral mitochondriopathy occurs with many coronaviruses (CoVs).

krcoombs — 2026-04-16 12:28:56 UTC

https://physoc.onlinelibrary.wiley.com/doi/full/10.1113/JP290297

Post-exertional physiology now sits at the uncomfortable intersection of metabolism, immunology, and cardiovascular function. Science and medicine must break down the conceptual silos between them, so exertion will not continue to be weaponized.

krcoombs — 2026-04-16 23:33:23 UTC

https://likeannopeningbandforthesun.substack.com/p/in-pursuit-of-understanding-the-crash?r=a36iw&triedRedirect=true

It’s airborne, and it always was. The researchers who said so early were right, and they had to fight for two years before the institutions responsible for public health would say it alongside them.

krcoombs — 2026-04-17 03:25:53 UTC

https://onelifelivedwell.substack.com/p/the-science-of-how-covid-spreads

More than 50% of households report coronavirus, fever-like symptoms – According to a survey, changing weather and poor air quality in Delhi-NCR may be weakening immunity and helping infections spread faster.

krcoombs — 2026-04-17 17:31:38 UTC

https://www.india.com/news/india/covid-back-in-delhi-more-than-50-of-households-report-coronavirus-fever-like-symptoms-survey-lockdown-virus-fever-cough-weather-changing-8381486/

Circulating Platelet-monocyte aggregates (PMA) were significantly elevated in Long COVID patients compared with control. N=40

krcoombs — 2026-04-19 02:21:24 UTC

https://www.biorxiv.org/content/10.64898/2026.04.09.717442v1

Chopra said her observations also reflect a broader pattern in the agricultural community, where workers face higher rates of long COVID but often don’t receive a diagnosis.

krcoombs — 2026-04-19 16:00:18 UTC

https://www.spokesman.com/stories/2026/apr/19/latino-farmworkers-face-high-rates-of-long-covid-b/

Children and adolescents with long COVID are significantly more likely to experience worsening grades, difficulty concentrating, and having limited fun with friends, according to a new study published in Academic Pediatrics. N=1976

krcoombs — 2026-04-19 16:10:26 UTC

https://www.cidrap.umn.edu/covid-19/study-links-long-covid-kids-worse-grades-attention-and-social-life

In this multicenter cohort largely exposed since Omicron and in second or third trimester, intrauterine SARS-CoV-2 exposure was not associated with neurodevelopmental screening outcomes through 18 months of age. N=1179

krcoombs — 2026-04-20 23:49:47 UTC

https://recovercovid.org/publications/intrauterine-sars-cov-2-exposure-and-infant-neurodevelopment-through-18-months-age

We’re looking at what’s happening inside the immune systems of people still sick years after infection, how AI and proteomics might finally unlock personalized treatment, and up to €115 billion a year in economic costs across OECD countries over the next decade.

krcoombs — 2026-04-21 23:58:08 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-177-75-million?r

"Long Covid is not a problem that has gone away, as some people like to think."

krcoombs — 2026-04-22 00:14:59 UTC

https://www.mirror.co.uk/news/health/long-covid-symptoms-number-cases-37045582

"The incorporation of the quality-of-life data was critical in truly showing how profoundly affected these kids are. Many had been dismissed by multiple providers previously as having only anxiety and school avoidance, and these metrics revealed their consistent, true lived experience.” N= 214

krcoombs — 2026-04-23 11:49:05 UTC

https://spectrumnews1.com/oh/columbus/news/2026/04/20/long-covid-symptoms-children

In general, the Long COVID group's symptom burden was less than that of the Severe ME/CFS group but more than that of the Moderate ME/CFS group. (paywall)

krcoombs — 2026-04-23 15:49:50 UTC

https://journals.sagepub.com/doi/abs/10.1177/17423953251347108?_gl=1*152ulcu*_up*MQ..*_ga*MTkxNzM3MTM1Ni4xNzc2OTU5Mjcx*_ga_60R758KFDG*czE3NzY5NTkyNzAkbzEkZzEkdDE3NzY5NTkyODAkajUwJGwwJGgxNTQ4NjU2MTM.

This study demonstrates an absence of detectable SARS-CoV-2 protein or RNA in placental tissue obtained as early as 40 days after maternal infection, suggesting that persistent placental infection is unlikely following clinical recovery. N=12

krcoombs — 2026-04-24 23:46:13 UTC

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2848018

Children and young adults with long COVID with cardiovascular symptoms display increased microclots, endothelial injury, and neutrophil inflammation, and may suggest intravascular NETosis as a key driver of endovascular pathology in long COVID. N=84

krcoombs — 2026-04-26 14:14:26 UTC

https://www.nature.com/articles/s41390-026-05024-1

When a child’s quality of life is comparable to that of a child with advanced cancer — and when we have a growing body of mechanistic evidence and repurposable drugs — therapeutic nihilism is a choice we need to justify, not just assume.

krcoombs — 2026-04-26 14:26:14 UTC

https://open.substack.com/pub/danilobuonsenso/p/my-pharmacological-approach-for-long-cb1?

Long Covid Families: Patient and caregiver-led 501(c)(3) supporting children and families.

krcoombs — 2026-04-28 02:16:12 UTC

https://linktr.ee/longcovidfam?sfnsn=mo

Coronavirus has become his target and his research delves into postural orthostatic tachycardia syndrome, finding that the pandemic and its aftermath triggered a surge in new cases of this disease of the heart.

krcoombs — 2026-04-28 15:02:05 UTC

https://archive.ph/mADNJ#selection-3261.65-3261.80

We’re looking at what’s driving brain fog in ME/CFS patients, how childhood infection leaves a mark on blood vessels, why vaccination may protect your heart, what happens when disability law meets a condition medicine still can’t fully explain, and more studies.

krcoombs — 2026-04-29 02:05:49 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-178-the-immune?

First, the exact nature of long-term neurological sequelae of SARS-CoV-2 infection remains undefined, and the relationship of risk for Alzheimer’s disease to inflammatory or infectious factors remains unsettled.

krcoombs — 2026-04-29 02:47:46 UTC

https://www.medscape.com/viewarticle/long-covid-linked-brain-changes-cognitive-decline-2026a1000dhe?src=rss

It is diagnosed not by a single test but by a pattern of symptoms that cannot otherwise be explained.

krcoombs — 2026-04-29 12:24:32 UTC

https://www.childrenshospital.org/newsroom/media-archive/long-covid-potentially-affects-nearly-6-million-children-us-south-shore-teen

And yet, we have a long history of dismissing, defunding, and criminalizing the forms of peer support that marginalized communities have built for themselves, often because they look unconventional to those who have never needed them. There’s a systematic devaluing of the idea that people most affected by a problem might actually be best positioned to solve it.

krcoombs — 2026-04-30 03:43:26 UTC

https://fionalowenstein.substack.com/p/where-has-all-the-peer-support-gone?

Current evidence review on the biological mechanisms thought to contribute to Long COVID, spanning immune dysregulation, viral persistence, autonomic dysfunction, microvascular pathology, and examining advances and limitations in contemporary diagnostic approaches, treatment strategies, and inconsistencies and gaps that hinder clinical consensus.

krcoombs — 2026-04-30 03:58:06 UTC

https://www.nature.com/articles/s43856-025-01300-z

COVID-19 patients who have a severe heart attack are at 25% higher risk for death than uninfected heart attack patients—more than double the prepandemic rate—for one year, researchers at Prairie Vascular Research in Saskatchewan, Canada, say. N=2,358

krcoombs — 2026-04-30 21:35:34 UTC

https://www.cidrap.umn.edu/covid-19/combination-covid-severe-heart-attack-confers-25-greater-risk-death-data-suggest

What this tells us is in a condition like long COVID POTS, which is complex and multisystemic, of which the heart rate aspect is just one aspect, that heart rate lowering alone does not translate into an improvement in a patient-reported outcome. N=180

krcoombs — 2026-04-30 21:38:50 UTC

https://www.medscape.com/viewarticle/pots-and-post-covid-pots-insights-recover-autonomic-and-2026a1000ck9

Many viruses can trigger chronic diseases. So far, Raducanu has shared limited details on her illness.

krcoombs — 2026-05-01 00:07:16 UTC

https://thesicktimes.org/2026/04/28/professional-tennis-player-emma-raducanu-has-post-viral-syndrome-and-commentators-are-giving-her-terrible-advice/

To help clinicians navigate available options, the study includes tables with medications and supplements that ME/CFS specialists commonly discuss with patients in the clinic, organized by symptom category, along with a summary of the current evidence for each.

krcoombs — 2026-05-01 03:43:12 UTC

https://tinyurl.com/443h4asd

https://www.annfammed.org/content/annalsfm/early/2026/04/24/afm.250266.full.pdf

Our data support the hypothesis of autoimmunity underlying pain-related symptoms in LC patients while providing new insights on the targets of these IgG, which are sensory neurons of lumbar dorsal root ganglia (DRG). Future research should focus on investigating the antigenic target and mechanisms behind DRG sensory neurons dysfunction. N=23

krcoombs — 2026-05-02 19:55:07 UTC

https://link.springer.com/article/10.1007/s00401-026-03019-0

COVID-19 is associated with increased incidence of new-onset laryngeal dysfunction, most commonly peaking 1–2 years after infection and influenced by hospitalization, mechanical ventilation, and vaccination status. N=180M EHR

krcoombs — 2026-05-03 02:15:35 UTC

https://onlinelibrary.wiley.com/doi/10.1002/lary.70590

This study underscores the critical need for longitudinal, within-person investigations to elucidate how vascular inflammation evolves over time. N=107

krcoombs — 2026-05-03 18:16:42 UTC

https://www.sciencedirect.com/science/article/pii/S2666354626000803?via%3Dihub

Individuals with SARDs were more likely to have SARS-CoV-2 antigen positivity at months 3 and 6 following COVID-19 infection compared with individuals without SARDs. N=558

krcoombs — 2026-05-03 18:46:35 UTC

https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/art.70205

Systemic Autoimmune Rheumatic Diseases = SARDs

This week, Sen Young had the opportunity to follow up with the secretary at this year’s budget hearing, who reported on the department’s efforts to identify biomarkers and committed to continuing the effort. This is welcome news.

krcoombs — 2026-05-04 20:01:04 UTC

https://www.foxnews.com/opinion/innovation-provide-solutions-long-covid-new-chronic-disease-time

De novo Insulin Resistance following COVID-19 dysregulates NETosis primarily through an insulin-enhancing effect. Post-viral control of glucose metabolism disorders may be critical to limit pathological NETosis and its thrombo-inflammatory consequences. N=60

krcoombs — 2026-05-05 01:13:41 UTC

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2026.1787799/full?sfnsn=mo

Updates on circulating low respiratory illnesses, COVID/Long COVID research, vaccines, MEcfs, Measles and more.

krcoombs — 2026-05-05 02:03:12 UTC

https://drruth.substack.com/p/dr-ruth-report-5326

RECOVER researchers continue to study how SARS-CoV-2, the virus that causes COVID-19, spreads through the lungs and eventually impacts other body systems, such as the heart and nervous system.

krcoombs — 2026-05-06 15:36:12 UTC

https://recovercovid.org/news/recover-builds-current-knowledge-about-symptoms-affecting-lungs-and-heart

Community Representatives working across the RECOVER Initiative gathered in listening sessions to share pressing needs in their communities, with the goal of expanding support for those impacted by Long COVID.

krcoombs — 2026-05-06 15:36:46 UTC

https://recovercovid.org/news/representatives-identify-community-needs-improve-support-people-long-covid

We propose that lung–blood viral dissemination is a potential mechanism for cardiovascular complications of respiratory viruses. N=93

krcoombs — 2026-05-07 02:26:03 UTC

https://www.ahajournals.org/doi/full/10.1161/JAHA.125.047693

Our results show that further research in this area may be beneficial to determine mechanisms for post-COVID-related symptoms in US military personnel and recent veterans. (N= >1720)

krcoombs — 2026-05-07 02:29:17 UTC

https://www.nature.com/articles/s43856-026-01621-7

The most important thing a person with long COVID can do is try to find a clinician who has some experience or is willing to develop experience with the disease. Someone who is there to support them and help them figure out how to best manage their symptoms. -Dr. Peluso

krcoombs — 2026-05-07 02:36:25 UTC

https://www.menshealth.com/health/a71130938/michael-peluso-liinc-long-covid-research-program/

Dr. Rao contributes to RECOVER in many ways, but she remains committed to what first motivated her to get involved: improving all aspects of care for children with Long COVID.

krcoombs — 2026-05-07 22:02:39 UTC

https://recovercovid.org/news/researcher-leads-studies-using-electronic-health-data-understand-long-covid-children

We have argued that Long COVID (PASC) is essentially a pro-found immune remodeling process that sets a “high-risk” immune baseline for the body through viral persistence, trained immunity, and endothelial dysfunction.

krcoombs — 2026-05-08 02:31:10 UTC

https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2026.1782871/full

To test pembrolizumab in people with ongoing neurologic symptoms of COVID-19.

krcoombs — 2026-05-08 02:31:58 UTC

https://clinicaltrials.gov/study/NCT07388550

The study, which analyzed electronic health record data from 40 children’s hospitals and health systems across the US, found that young patients who had a second confirmed SARS-CoV-2 infection during the omicron period were more than twice as likely to receive a clinician-documented diagnosis of long COVID as those in the same calendar period after a first infection. (N=465 K)

krcoombs — 2026-05-09 14:50:58 UTC

https://news.feinberg.northwestern.edu/2026/05/08/reinfection-raises-long-covid-risk-in-children-and-adolescents/

“These data suggest we should be as cautious with exercise in long COVID as we have come to be in ME/CFS,” says Davenport. “I don’t know how often we need to continue to put our finger on that light socket.”

krcoombs — 2026-05-09 20:58:25 UTC

https://archive.ph/2026.04.22-183906/https://www.newscientist.com/article/2523882-exercise-advice-for-long-covid-may-be-doing-more-harm-than-good/

But as we report here, for some people with long covid it does the exact opposite, potentially triggering severe muscular and cellular damage.

krcoombs — 2026-05-09 20:59:17 UTC

https://www.newscientist.com/article/mg27035932-200-long-covid-reveals-the-harm-of-one-size-fits-all-medical-treatment/

This model posits that the Long COVID state constitutes the “first hit,” establishing a “primed” or “hyper-reactive” immune baseline through viral persistence, trained immunity-induced monocyte reprogramming, and sustained endothelial dysfunction. Upon the “second hit” of a bacterial infection, this primed immune system triggers a dysregulated, synergistically amplified inflammatory cascade.

krcoombs — 2026-05-09 21:06:25 UTC

https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2026.1782871/full

Significant racial and ethnic disparities in pediatric long COVID, and MIS-C outcomes emphasize the need for targeted interventions addressing social and healthcare inequities.

krcoombs — 2026-05-09 22:38:31 UTC

https://link.springer.com/article/10.1186/s12879-026-12848-z

What they found: a disease that changes over time, and is not the same in every child. Symptom burden remains high — and doesn’t reliably improve, the immune signature evolves over time, there are biologically distinct subgroups, and nervous system is involved.

krcoombs — 2026-05-10 15:04:04 UTC

https://danilobuonsenso.substack.com/p/not-one-disease-but-many-new-research

Presentations were centered on the latest findings from research on disease mechanisms, ranging from insights into genetics, biomarkers, and imaging, to vascular, neuronal, immune, metabolic dysfunction, and showcasing recent data and results from clinical trials investigating treatments, with a focus on interventions targeting immune dysregulation.

krcoombs — 2026-05-11 13:39:11 UTC

https://events.mecfs-research.org/en/events/conference_2026

These data delineate immune-metabolic and haematological axes of paediatric LC heterogeneity and support biomarker-guided stratification. N=101

krcoombs — 2026-05-11 14:31:48 UTC

https://www.nature.com/articles/s41467-026-72224-y

“Life expectancy of those who died with COVID-19 was substantial and, based on our analysis of vulnerability, most of those who died at ages 65 and over are unlikely to have been close to death. In future pandemics, real-time modeling of displacement would be helpful in assessing the mortality impact of the pandemic.”

krcoombs — 2026-05-11 20:51:47 UTC

https://www.cidrap.umn.edu/covid-19/many-older-adults-who-died-covid-weren-t-close-death-infection-study-suggests

We hope that the suggestions offered here will help investigators and reviewers promote the ethics of these important trials, helping advance the interests of research participants while bringing much-needed disease-modifying therapies to the Long COVID community with rigor and expediency.

krcoombs — 2026-05-12 17:08:37 UTC

https://www.sciencedirect.com/science/article/pii/S2589537026001665#appsec1

Half of our cohort met the WHO 2023 criteria for Pediatric Long COVID-19. This implies the need for increased resources for SARS-CoV-2 testing and pharmacotherapy in similar resource-constrained settings, to reduce the potential burden of Long COVID-19 on the healthcare and educational systems for these children and adolescents. N=74

krcoombs — 2026-05-12 19:43:03 UTC

https://journals.lww.com/pidj/fulltext/9900/long_covid_19_in_hospitalized_and_ambulatory.1720.aspx

The first main theme, ‘I am stumbling in the dark: Living with unpredictability and limitations,’ covers how CYP were affected by the consequences of long COVID. ‘Navigating responses from others to find support’ illustrates how others have responded to their symptoms and how these responses were perceived by the CYP.

krcoombs — 2026-05-12 20:02:30 UTC

https://bmjpaedsopen.bmj.com/content/10/1/e004167

CYP= Children and Young People

During a Q&A with CIDRAP News, he explained how and why superspreaders are key to understanding the Andes strain of hantavirus, why close proximity is only part of the consideration, and why he doesn’t think this outbreak is the next “big one.”

krcoombs — 2026-05-14 22:15:54 UTC

https://www.cidrap.umn.edu/misc-emerging-topics/osterholm-hantavirus-we-re-missing-main-point-outbreak

“Innovation in complex disease research doesn’t usually move in a straight line. Supporting different scientific approaches can give researchers more opportunities to uncover insights that reflect the range of patient experiences.”

krcoombs — 2026-05-16 03:36:26 UTC

https://www.laweekly.com/how-emily-taylor-shaped-solve-m-e-s-catalyst-awards-to-accelerate-breakthrough-research-in-me-cfs-and-long-covid/

A “unifying” hypothesis of the mechanisms, triggers, and risk factors for myalgic encephalomyelitis (ME), is gaining support. Further evaluation and development of a potential drug depend on funding.

krcoombs — 2026-05-16 03:38:10 UTC

https://thesicktimes.org/2026/05/14/breaking-the-vicious-cycle-how-two-german-scientists-seek-to-solve-me/

In summary, our findings show that changes in biomarkers indicative of ED, including alterations in arginine and taurine-related nitric oxide (NO) metabolism, persist at a median of 37.4 weeks following SARS-CoV-2 infection. Additionally, our findings revealed that fatigue-related PCS severity is associated with persistent specific fatty acid elevations. N=272

krcoombs — 2026-05-16 03:39:40 UTC

https://www.nature.com/articles/s41598-026-50965-6

ED= endothelial dysfunction

This study aimed to characterize sleep, and the intraindividual variability (IIV) of sleep in people living with ME/CFS compared with matched controls. N=74

krcoombs — 2026-05-16 03:44:34 UTC

https://link.springer.com/article/10.1007/s44470-026-00079-7

Pharmacologist Klaus Wirth and immunologist Carmen Scheibenbogen describe myalgic encephalomyelitis (ME) as a complex of impaired blood flow and self-perpetuating mitochondrial damage.

krcoombs — 2026-05-16 16:10:20 UTC

https://thesicktimes.org/2026/05/14/breaking-the-vicious-cycle-how-two-german-scientists-seek-to-solve-me/

Experts say slashed funding and growing misinformation are some of the greatest challenges facing public health

krcoombs — 2026-05-17 14:04:40 UTC

https://www.theguardian.com/us-news/2026/may/17/pandemic-preparedness-after-covid

Long COVID and ME/CFS are among the most globally debated, scientifically contested, and clinically underserved conditions of our era. The global burden is enormous —

krcoombs — 2026-05-17 18:45:26 UTC

https://open.substack.com/pub/danilobuonsenso/p/the-doctor-everyone-knows-for-long?

This study examined markers of blood vessel inflammation in people with an acute C-19 infection, people who’d had long COVID for years, and recovered C-19 patients and found that acute coronavirus infection triggers a cytokine storm that pummels the lining of blood vessels. A year later, a different kind of immune activation is present.

krcoombs — 2026-05-18 15:14:27 UTC

https://www.healthrising.org/blog/2026/05/17/blood-vessel-brain-fog-long-covid/

In this randomized study, 2.9% of household contacts who took ensitrelvir developed COVID within 10 days, as compared with 9% of placebo recipients.

krcoombs — 2026-05-18 20:28:59 UTC

https://www.medpagetoday.com/infectiousdisease/covid19/121257

Oral antiviral drug use was associated with a 14% lower risk of long COVID among nonhospitalized patients with Omicron infections and with better patient-reported and functional outcomes after infection.

krcoombs — 2026-05-18 22:47:40 UTC

https://www.cidrap.umn.edu/covid-19/early-antiviral-use-may-lower-risk-long-covid-mildly-ill-patients-aid-recovery-infection

This week’s roundup pulls together studies tracing those threads: how the immune system stays unsettled, why fatigue hits some workers harder than others, and what’s behind the persistent vascular and metabolic changes researchers keep finding.

krcoombs — 2026-05-19 18:07:04 UTC

https://longcovidweekly.substack.com/p/long-covid-weekly-181-the-gut-the?r=a36iw&triedRedirect=true

COVID-19 appears to have driven a sharp rise in myocarditis cases during the pandemic, and rates have remained elevated ever since. N=778

krcoombs — 2026-05-21 21:06:10 UTC

https://www.cidrap.umn.edu/covid-19/myocarditis-rates-surged-during-covid-and-stayed-high-study-suggests

Orthostatic Intolerance is an umbrella term for symptoms that worsen when standing and improve when lying down. It’s a hallmark feature of ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs). Testing confirms symptoms are upright-related and guides treatment and referrals.

krcoombs — 2026-05-22 01:40:00 UTC

https://batemanhornecenter.org/orthostatic_intolerance_testing_made_clear/

Higher demands and few resources: Despite the lack of preventive options and the need for more answers, the U.S. is moving further away from being able to effectively manage long COVID.

krcoombs — 2026-05-22 16:58:49 UTC

https://theconversation.com/long-covid-will-cost-the-us-an-estimated-8-billion-over-just-3-years-due-to-healthcare-burden-managing-symptoms-and-loss-to-the-workforce-280350

This is not “just being bad with heat.” For many disabled people, heat increases physiological stress, symptom burden, and risk of deterioration. It’s a disability access and political issue, especially in the workplace or in rented accommodation.

krcoombs — 2026-05-22 18:29:22 UTC

https://longcovidadvocacy.substack.com/p/cooling-tips-101?

Historically, the absence of validated biomarkers, heterogeneous definitions, and limited investigative capacity have complicated mechanistic interpretation and contributed to the use of psychosocial and rehabilitative frameworks in clinical practice and in parts of the literature.

krcoombs — 2026-05-23 02:55:04 UTC

https://link.springer.com/article/10.1186/s12967-026-08319-3

It exposed the limits of a healthcare system built around the assumption that illnesses are only fully real once they become visible through testing. Many patients with Long COVID were encountering patterns of disbelief that chronically ill people had been describing for decades.

krcoombs — 2026-05-23 13:11:24 UTC

https://www.blog.brittanijamesmd.com/p/long-covid-changed-everything?

"The goal is to be sure that the nominee for permanent commissioner has serious clinical medical or public health credentials. Whether that happens is unsure."

krcoombs — 2026-05-23 15:44:49 UTC

https://www.medpagetoday.com/washington-watch/fdageneral/121352

We reported diffusion abnormalities in the fornix and corpus callosum in participants with verified COVID who reported persistent neurological symptoms ≥ 6 months after infection that were not observed among participants who had not had COVID-19 or those who fully recovered. N=80

krcoombs — 2026-05-24 23:11:41 UTC

https://www.sciencedirect.com/science/article/pii/S2666354626000839

Having her Olympic dream taken from her by this illness has made her reflect on her own identity and the experience of sufferers of similar conditions.

krcoombs — 2026-05-26 03:44:24 UTC

https://www.bbc.com/audio/play/p0nm9bzl

Orthostatic intolerance (OI) is a common and often overlooked feature of ME/CFS, Long COVID, and related infection-associated chronic conditions (IACCs). The 10-Minute NASA Lean Test is an accessible, office-based assessment that can help clinicians identify abnormal physiologic responses to upright posture.

krcoombs — 2026-05-26 20:57:34 UTC

https://www.youtube.com/watch?v=96GCnYWX8D4&t

Long COVID features autoantibodies targeting neural and vascular tissues. Patients’ IgG shows increased ADCP activity against MED20. Passive transfer of IgG induces pain and fatigue-like phenotypes in mice

krcoombs — 2026-05-28 18:03:25 UTC

https://www.cell.com/cell/abstract/S0092-8674(26)00509-X?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS009286742600509X%3Fshowall%3Dtrue

New Artificial Intelligence Algorithm Reveals Long COVID Prevalence Twice as High as Previously Estimated Across U.S. Hospitals. N=460K

krcoombs — 2026-05-28 18:04:49 UTC

https://scienmag.com/multi-hospital-study-reveals-long-covid-burden-is-twice-as-high-as-current-estimates/

In an effort to help patients with long COVID, family medicine clinicians can borrow from the treatment of another chronic syndrome, according to a new study published in Annals of Family Medicine.

krcoombs — 2026-05-29 18:50:49 UTC

https://www.medscape.com/viewarticle/physicians-are-undertreating-chronic-fatigue-they-could-2026a1000hwg?sfnsn=mo

A Mount Sinai-led research team has demonstrated that autoimmunity, in which the body's immune system attacks its own tissues, is responsible for the often-debilitating and confounding symptoms of long COVID in a subset of people.

krcoombs — 2026-05-31 01:39:42 UTC

https://www.msn.com/en-us/health/other/scientists-validate-a-link-between-autoimmunity-and-long-covid/ar-AA24h4o4?cvid=6a1b68cd87174b98bf5632a40dabf0e2&ei=12

457 950 patients with C-19 across 58 hospitals, validated computable phenotyping identified long COVID in 16.28% of cases, 2-fold higher than diagnostic code–based surveillance. Of identified manifestations, 89.31% represented chronic conditions, with prevalence increasing through mid-2024.

krcoombs — 2026-06-01 16:21:25 UTC

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2849452

In an interview with The American Journal of Managed Care at the American Thoracic Society International Conference 2026, Krishnan highlights how long COVID, heterogeneity, respiratory complications, and immune dysfunction are shaping future research and clinical care.

krcoombs — 2026-06-01 16:23:05 UTC

https://www.ajmc.com/view/long-covid-lung-damage-and-immune-dysfunction-across-the-lifespan-jerry-krishnan-md-phd

Proal said that Long COVID being a primarily tissue-based condition “is one of the reasons why patients are most misunderstood when they go to a doctor,” noting that many standard blood tests have not found abnormalities in people with the disease. “That can lead to dismissal or gaslighting or things that are very problematic.”

krcoombs — 2026-06-01 18:29:49 UTC

https://thesicktimes.org/2026/05/29/polybios-spring-2026-symposium-advancing-long-covid-biomarkers-and-treatments/

Long COVID may be affecting far more Americans than current estimates suggest, with a study published last week in JAMA Network Open estimating that roughly one in six people infected with SARS-CoV-2 develop the condition, and nearly 90% go on to experience chronic health problems. N= 457,950

krcoombs — 2026-06-01 23:36:20 UTC

https://www.cidrap.umn.edu/covid-19/long-covid-may-affect-1-6-infected-patients

Stigma is pervasive among children with Long COVID, affecting many aspects of life including healthcare interactions and social relationships.

krcoombs — 2026-06-02 12:56:26 UTC

https://www.nature.com/articles/s41390-026-05110-4?utm_id=97757_v0_s00_e0_tv2_a1dennhb5mwwvp

What happens to your heart, brain, and metabolism after COVID?

krcoombs — 2026-06-02 17:50:42 UTC

https://open.substack.com/pub/longcovidweekly/p/long-covid-weekly-183new-data-on?

Visits in the second phase of the adult observational study will continue for 2 years, enabling researchers to better understand how Long COVID impacts people over a longer period and to provide up to 7 years of data for some participants who joined the observational study in 2021.

krcoombs — 2026-06-03 14:23:53 UTC

https://recovercovid.org/news/recover-launches-second-phase-adult-observational-study

Despite being set up to protect vulnerable participants, these boards are ill-equipped to ensure research is safe, especially regarding post-exertional malaise (PEM).

krcoombs — 2026-06-03 16:59:36 UTC

https://thesicktimes.org/2026/06/02/research-ethics-boards-need-urgent-training-on-long-covid-and-myalgic-encephalomyelitis/

Instead of a disorder of perception, the existing scientific literature describes a multi-system disease of bioenergetic failure, immune dysregulation, and vascular dysfunction.

krcoombs — 2026-06-04 02:34:50 UTC

https://likeannopeningbandforthesun.substack.com/p/revisiting-the-painful-truth-of-long?

POTS is one specific cause of OI, not the whole picture. Orthostatic intolerance is a broader category, and the absence of a POTS diagnosis does not rule out other causes of OI, including other forms of dysautonomia.

krcoombs — 2026-06-04 19:35:18 UTC

https://batemanhornecenter.org/when_its_not_pots/

A new study co-led by Yale scientists reveals that antibodies from some long COVID patients attacked brain and nerve tissues, a finding that could point toward treatments.

krcoombs — 2026-06-04 19:36:45 UTC

https://news.yale.edu/2026/05/28/yale-study-links-some-long-covid-patients-autoimmune-responses

This Brain Inflammation Collaborative webinar featured Dr. Leonard Jason, presenting on pacing as an intervention for managing post-exertional malaise (PEM), and Anvita Guda (BIC) explained how the unhide platform’s pacing notifications work using wearable device data to help patients monitor and manage their activity levels..

krcoombs — 2026-06-05 19:03:07 UTC

Living Within The Energy Envelope: Research Updates & Interventions for People with ME/CFS - braininflammation

unhide: https://unhidenow.org/how-it-works/

"Clinically, ME/CFS, Gulf War illness, and many Long COVID patients look almost identical".

krcoombs — 2026-06-06 03:20:43 UTC

https://michaela.substack.com/p/the-message-of-hope

This work will significantly advance the field by providing stratification of ME/CFS by mycotoxin exposure and providing novel insights into environmentally driven immune reprogramming in ME/CFS.

krcoombs — 2026-06-06 15:04:27 UTC

https://reporter.nih.gov/search/5w7xmrOYnUq1OuRlHWaNew/project-details/11347476

We focus on two convergent mechanisms: (1) the activation of glial Toll-like receptor (TLR)4/TLR2 signaling, which initiates a chronic neuroinflammatory cascade, and (2) the disruption of host proteostasis, which seeds neurodegenerative proteinopathies like alpha-synuclein and tau aggregation.

krcoombs — 2026-06-08 02:27:24 UTC

https://www.sciencedirect.com/science/article/pii/S1879625726000519

krcoombs — 2026-06-08 22:57:05 UTC

“I used to think that a lot of the acute infections are inconsequential in the long term,” said Al-Aly. Today, he sees things differently.“The pandemic sort of proved this to be a wrong model of thinking.”

krcoombs — 2026-06-09 16:32:51 UTC

https://san.com/cc/can-every-infection-become-a-chronic-disease/

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